Motion made, and Question proposed, That the sitting be now adjourned.—(Damian Hinds.)
Our subject for debate is the national commissioning of NHS specialised services. There is clearly great interest in the debate and I am sure colleagues can work out how much time is at our disposal. Obviously, I want to call everyone who would like to speak.
It is a pleasure to open this debate and to serve under your chairmanship, Sir David. May I be one of the first to congratulate you on your recent knighthood? “Sir David Amess” looks very good on the name plate. I welcome the many hon. and right hon. Members who have made the time today to come and discuss this important issue. I know that there are many Members who would have been here today, but have other commitments, including my hon. Friend the Member for Meon Valley (George Hollingbery) and my right hon. Friend the Member for North West Hampshire (Sir George Young). They have both contacted me about particular cases and share the general concerns that we will be expressing this afternoon, and I am sure they are not the only ones.
I want to speak up for patients and reflect the concerns of those with rare and complex conditions, whose voice is often not heard. There are two principal issues here: concern over changes to commissioning arrangements for specialised health care and whether it is right that morbid obesity and renal dialysis are no longer considered to be specialised services. The debate comes at a vital time. We are in the middle of a six-month period during which NHS England is developing plans to change radically the way specialised services are planned and funded. NHS England is doing that with remarkable secrecy, militating against external scrutiny. Today is an opportunity to discuss what we know and to test its fitness for purpose.
I have to declare an interest as someone with a rare condition. Although I live in Scotland, I benefit from a specialised service delivered by NHS England in Cambridge. Does the hon. Gentleman agree that the importance of specialised services means that they should be managed nationally so that they are not competing against local priorities? That is particularly important for cross-border matters. National management builds expertise—few people know a great deal about my condition—and ensures that there are national standards across the whole of the United Kingdom, and not just in one part.
The hon. Lady is absolutely right. It is a testament to the value of the House being made up of people from all walks of life and with different experiences that she can bring personal experience to the debate. She underlines many of the points that I will go on to make.
I will reflect the views of patient groups and seek a number of reassurances from the Minister, but first let us define specialised services. They can often be thought of as relatively niche or peripheral and of interest only to those with genetic conditions. Those conditions are of course important, but specialised services extend far beyond that and are relevant to everyone. Collectively, tens of thousands of people call upon specialised services for such things as HIV, cystic fibrosis, multiple sclerosis, muscular dystrophy, epilepsy, haemophilia, leukaemia and other cancers, renal dialysis and hepatitis C, among many other conditions. Indeed, any one of us could have need of specialised services for spinal injury, severe burns or brain injury. It is therefore not simply the rarity of the condition that defines specialised services, although they do serve the smallest patient populations too, but the considerable specialist expertise and cost needed to deliver high-quality services, strategically planned and procured across the country.
Specialised services are a major component of the NHS. Their collective budget for 2015-16 is £14.6 billion, which represents more than 14% of the total NHS budget. Specialised services include some of the most advanced technologies and procedures and play a crucial role in fostering innovation across the NHS with clinical expertise to match. Most importantly, many of the most vulnerable patients rely upon specialised services and would face a life of unmitigated disability and often shortened duration if those services were not procured in a proper way. In short, specialised services help patients and their families in their greatest need and are crucial in keeping the NHS as the world-class service we all want it to be.
As a result, specialised services individually and collectively need careful planning. We are reminded by NHS England to
“think like a patient and act like a taxpayer”,
and with both hats on it makes most sense to ensure that specialised services are planned and managed at the most efficient level, with the requisite expertise and as little duplication of effort as possible. For those reasons, the Health and Social Care Act 2012 introduced significant reforms to the commissioning process—the planning and funding of specialised services. Those particular changes met with unique cross-party support, as well as enthusiastic endorsement from patient groups.
In summary, the commissioning of specialised services was centralised at a national level as a direct responsibility of NHS England. The Government’s impact statement on the 2012 Act said that that was intended to
“reduce management costs and deliver improved outcomes through…streamlining decision-making, funding, planning and commissioning...greater consistency and reducing unacceptable and inequitable access...pooling…expertise, reducing administration costs and a tier of bureaucracy; and enabling consistent approach to service specifications to contain costs and get best value for money”.
That is exactly the point that the hon. Lady made on national standards and having consistent patient experiences across the country.
NHS England was duly established in April 2013, and by the following March it had begun to deliver the Government’s intentions. An NHS England report in March 2014 on hospital compliance with national standards, which sadly is unpublished, said:
“The development of this set of new national specifications and policies, for our services, is a significant achievement given that there was limited national consistency prior to the establishment of NHS England...The development of this set of new national standards and policies is only the beginning of what will be a continuous drive for improvement across all of the services NHS England commissions.”
There was, therefore, a clear picture of how specialised commissioning was developing up to the first half of last year. National funding offered the chance to make improvements across the board, albeit with a recognition that the new system would need some time to bed in and deliver progress in all parts of the country.
We need to talk about what has changed and what the threat is. Since May 2014, NHS England has engaged in a wholesale internal review of its specialised commissioning function. A major driver of that was a deficit in the specialised budget, due primarily to a widely predicted underestimate of what had been spent on specialised services prior to April 2013 and an overspend on the cancer drugs fund. The first of those issues was rectified in December 2014, when the deficit was eliminated by an increase in the baseline budget for specialised commissioning for 2015-16.
That was a welcome development, but what was less welcome were the results of that earlier review and the plans being taken forward by NHS England at the highest level. No commissioning model is perfect and there are benefits and disbenefits to each, but in separating out specialised from non-specialised commissioning, the 2012 Act prioritised excellence in commissioning over a unified commissioning function. In other words, each service was allocated to the commissioning level most competent in meeting the requirements. For example, routine respiratory problems are dealt with by local clinical commissioning groups, but complex and expensive respiratory disorders are planned and managed nationally on behalf of all patients in England.
Asking local commissioners to plan and procure the complex facilities required for rare disorders has been unsuccessful in the past. The high cost of the services and the unpredictability of demand for them can be financially destabilising to local commissioners. It makes no sense for local commissioners in Cornwall or Norfolk to retain expertise in so many fields when they may have few or no patients requiring them. Local commissioners are then at a clear disadvantage in dealing with the large tertiary trusts that possess that expertise and are sighted on their entire customer base across the country.
All that is not to deny that NHS England and local commissioners need to work collaboratively. Indeed, patient groups and others have long called for NHS England to work more closely with local commissioners as it commissions specialised health care. In developing proposals to co-commission specialised services with local clinical commissioning groups, NHS England is going far beyond mere collaboration.
There is a huge danger that we will move away from the improved patient experience that we have seen during the past year while national commissioning has been in place for specialised services towards more of a patchwork quilt approach in which patients may not get the same care in different parts of the country or the same pathways to care.
A number of rare diseases are genetic and, therefore, they often come in pockets, which means that some local health commissioners may face a heavy burden while others face none. The beauty of the specialist commissioning is that the cost is spread across the whole country, rather than falling on individual commissioning bodies.
The hon. Lady is entirely right. I will continue to set out the case that she so powerfully makes from personal experience.
In a board paper last November, NHS England published its next steps on specialised commissioning. Frankly, that was to the dismay of patient organisations, some of whom have been involved with specialised services for more than a decade, yet none was contacted or engaged with about the paper’s contents. It set out several principles for co-commissioning, perhaps the most alarming of which was the intention to move towards population accountability and lay the groundwork for place-based population budgets. That would essentially represent a return to the status quo ante under primary care trusts and, therefore, contravene Parliament’s wishes as embodied in the Health and Social Care Act 2012.
In particular, budgets allocated to local populations will usher in that patchwork quilt of provision for patients throughout England that hon. Members have referred to, with varying standards of care to match. NHS England suggests that its national standards would continue to apply, but experience shows that that would be untenable. The history of the PCTs is likely to be repeated, with the clinical commissioning groups going their own ways.
Despite opposition from key stakeholders, which I will touch on shortly, NHS England seems determined to implement its proposals. In December it took the unprecedented step of publishing notional local allocations of its own specialised commissioning budget. The sums have already been done and NHS England is now showing local CCGs the sheer scale of the budget that it expects to make accessible to them. Remarkably, only £1 billion of the £14.6 billion of allocated expenditure for 2015-16 is exclusively for national commissioning. Therefore, more than £13 billion of services that are currently commissioned nationally will be subject to co-commissioning. That is a huge transfer of resources and responsibility in the making, which surely requires prior, not retrospective, parliamentary and public scrutiny. Remember: that is funding for complex heart surgery, teenage cancers and chronic liver and blood diseases that affect some of the most vulnerable people in our community.
Why is this move so risky? First, we can say with certainty that local commissioning of such services does not work. As I alluded to already, before April 2013 responsibility for those services was with local commissioners. The 2006 Carter report brought about significant improvements, but the results remained mixed at best. The Select Committee on Health produced a report on commissioning in March 2010 that reviewed local primary care trusts’ performance in funding specialised services. It found that
“many PCTs are still disengaged from specialised commissioning…In addition, specialised commissioning is weakened by the fact that as a pooled responsibility between PCTs, it sits in a ‘limbo’, where it is not properly regulated, performance managed, scrutinised or held to account.”
In view of NHS England’s intention to move towards place-based budgets, it is also worth quoting the Committee’s remarks on the
“danger that the low priority”
given to specialised services by local commissioners
“will mean that funding for specialised commissioning will be disproportionately cut in the coming period of financial restraint.”
Perhaps because of that, patients’ groups and others have been emphatic in their opposition to local control of the specialised budget. Last year, the Specialised Healthcare Alliance, a coalition of more than 100 patient-related organisations and 15 corporate members that has campaigned on behalf of people who use specialised services for more than a decade, ran a survey of more than 100 representatives of patient groups, companies and expert clinicians that sought views on potential changes to commissioning arrangements for specialised services. It found that 90% of respondents preferred their service to remain part of specialised commissioning at a national level and none favoured leaving specialised commissioning arrangements. It also found that 82% favoured either no change to commissioning responsibilities for their service or for more of their service to be incorporated within specialised commissioning. Only 9% opted for more commissioning responsibilities to fall to CCGs. On co-commissioning, while respondents were open to collaboration between NHS England and local commissioners, only 15% would be happy to see that include pooling of budgets with CCGs.
I am grateful to the Muscular Dystrophy Campaign, the British Kidney Patient Association, the Cystic Fibrosis Trust, the Motor Neurone Disease Association, the Association of British Pharmaceutical Industry, the Royal College of Physicians, the NHS Clinical Commissioners, NHS Providers, the Medical Technology Group, AbbVie and Novartis for engaging with the debate. Uniquely, all the groups that have been in discussion with me share my concerns about the timing and content of these proposals.
Despite the clear views being expressed by the patient community and others, neither NHS England nor the Department of Health has opened any consultation on the developments. No stakeholder events have been held and NHS England has not even published full and explicit details of its plans for co-commissioning.
Given the magnitude of the plans, I hope that my right hon. Friend the Minister will give us assurances today. I ask for specific guarantees to satisfy the concerns that have been raised with me. First, will he commit to ensuring that NHS England will remain the sole budget holder for specialised services? Specifically, will he commit to that not just for 2015-16, but for the years that follow? That is crucial to clear accountability and consistency in those specialised services.
Secondly, will the Minister guarantee that national service standards and clinical access policies will remain in force throughout England, with no variation from the core standards permitted? Again, will he specifically give these assurances not just for 2015-16, but for future years?
My hon. Friend has been making a powerful case. As he draws to a close, will he join with me and agree that the work of the Prescription Charges Coalition is associated with his comments? Many people with lifetime illnesses and conditions are being subjected to paying prescription charges.
I thank my hon. Friend for his remarks, which are exactly on the money. Every organisation that I engaged with expressed real concern about the proposals. He puts on the record a further organisation that shares concerns on the direction in which NHS England is taking specialised health services.
Will the Minister give a commitment to openness, transparency and public engagement? The Government so often talk about that, yet NHS England has failed to demonstrate it. Will he also promise that any changes to specialised commissioning, including co-commissioning or collaborative commissioning, will be consulted on with patients, providers and the public before they are implemented?
In its leader article this week, the Health Service Journal asks whether specialised services should “pay the price” of NHS changes. It suggests that while that may be NHS England’s strategy, key decisions are being shunted until after the election to keep them out of the spotlight. I submit that this matter is too important to the House for us to see it treated in such a way. We all know that the NHS faces challenges, including those in specialised commissioning, but a policy of stealth is no way to proceed.
I leave the final word to my constituent, Nicola Hawkins, who has been on renal dialysis for eight years and secured more than 35,000 signatures to a petition about plans to remove renal dialysis from specialised provision altogether. She is just one of tens of thousands of people who will be affected. She says:
“I am a single mother of a 13 year old girl, I work full time hours to try and pay the mortgage and I am really struggling. I don’t understand why the changes are being made and I don’t know what the impact will be on my life. I’ve tried to engage with Government but heard nothing back, despite a 35,000 name petition. I don’t have an explanation of why the changes are happening or what they mean for me. I am worried that these changes could mean negative consequences for my health and wellbeing, my ability to support my family and that my care will fall to local GPs who don’t have expertise in my condition. I’m confused about the changes and frightened about the future.”
The changes are happening too fast and without proper consultation. Almost unanimously, they are seen to be a backward step. Nicola and the tens of thousands of people like her throughout our country deserve better.
I congratulate you, Sir David, on your knighthood, which is well deserved. I also congratulate the hon. Member for St Austell and Newquay (Stephen Gilbert) on the very good way in which he introduced this serious issue; I disagree with nothing that he said.
I apologise, Sir David, because as I told you earlier I am one of the co-signatories of the debate that is to take place in the main Chamber. I think this is the first time since the setting up of the Backbench Business Committee, which we both sit on, that proceedings in the Chamber have not been extended by questions or statements, so they will run to time for the first time. Unfortunately, I will have to leave, although I will get back for the wind-ups, if possible, or even before.
I want to pick up on three things: the work that I am involved in as the chair of the all-party group for muscular dystrophy; issues brought to my attention by the Northern Neurological Alliance in the north-east; and some specific concerns about NHS England and what it is involved in.
The APG for muscular dystrophy has in effect been carrying out an investigation for more than a year into national commissioning. We worked closely with various groups before the change in the law, developing good working relationships and trying to ensure that people with these relatively rare diseases are looked after properly and that the commissioning works properly in their interests. We have had full engagement and good commitment from patients, carers, the NHS professionals, politicians—and, it has to be said, health service Ministers.
What has become clear, as will come up in the report that will probably be launched in the House on 24 March, is that there are many gaps in specialised neuromuscular care, which will be highlighted, at least, by the inquiry, but will need addressing by people such as the Minister, although hopefully under another Administration a few weeks later.
For example, in my region, the north-east, we have world-class, cutting-edge neuromuscular specialists working in multi-disciplinary care at the specialist muscle centre in Newcastle. On the grounds of urgent need for more support, however, we need additional neuromuscular care, advice and support to provide essential services to people living at home with such problems. We need an additional neuromuscular consultant and the psychological support necessary for people who live with these problems. Will the Minister meet me and the rest of the APG for muscular dystrophy to discuss not only the issues in the north-east, which are examples of the type of cases being brought before the investigation, but the problems throughout the country, to see what we can to do to improve care for these people?
The hon. Member for St Austell and Newquay expressed concerns about co-commissioning and the provision of specialised services between NHS England and the CCGs. That is a real worry. Problems have been identified and raised with us in the implementation and interpretation of the neuromuscular annex of NHS England’s neurosciences service specifications. Some commissioners and hospital trusts appear to believe that the neuromuscular annex is a wish list, rather than a requirement. We are clear: it should be a requirement, not a wish list. Will the Minister address those points, if he can, in winding up? What action will he take to ensure that the neuromuscular annex of the service specification is fulfilled by NHS trusts listed in the specification as a compulsory requirement? If he can make that clear to the people on the ground, that would be a great step forward with the problems.
I also want to raise some issues brought to me by the Northern Neurological Alliance, a charity that operates in Northumberland, Tyne and Wear and County Durham. It aims to improve the lives of people with long-term neurological conditions, or LTNCs, and their carers. It does so by seeking their views on the quality of services received and then campaigning for improvements where necessary. The charity calculates that in the north-east of England at least 50,000 people are living with one of the 15 most common LTNCs, such as multiple sclerosis, Parkinson’s disease and acquired brain injury. Many LTNCs, however, are less common.
Many people experience reductions in their quality of life as a result of such conditions. Many examples have been given of loss of independence, poor mobility leading to social isolation, and, clearly, financial challenges. In addition to those who have such conditions, there are the many family members who act as carers. As a result, the total number of people in the north-east affected by LTNCs is much greater than the 50,000 who actually have the conditions.
Without doubt, services for such people need to be improved. In 2011 the National Audit Office published a report that looked at the services provided for the some 2 million people who are assessed to be suffering with a neurological condition. They found evidence of poor co-ordination of services between health and social care, and a nationwide postcode lottery of specialist services. Unfortunately, it would appear that things have not improved a great deal.
The Neurological Alliance has contacted the CCGs for information about how they target resources for people with neurological conditions. The findings show that only 14.7% of CCGs have assessed local costs for the provision of neurology services; that only 20.4% and 26.2% of CCGs have assessed, respectively, the number of people using neurological services and the prevalence of neurological conditions within their area; and that such issues have a significant impact on patient care, with 58.1% of patients having experienced problems in accessing the services or treatment they need—clearly, a big group of people.
LTNCs have not attracted the same national priority as conditions such as cancer or heart disease, which is possibly understandable because of the greater prevalence of such diseases. However, for people who live with LTNCs, it is equally important to get looked after properly, too. They clearly wait much longer for services to come through. The impact can be serious for many of them. The need for clear and determined national leadership is urgent to achieve the requisite improvements that I hope everyone in the Chamber agrees we should be seeking.
Finally, I want to pick up an issue that has arisen in the past few days; I spoke about it yesterday with the Prime Minister. It involves some of the problems with NHS England. A new drug called Translarna can treat a small group of young boys who suffer from a strain of muscular dystrophy known as Duchenne muscular dystrophy. In August 2014, the European Commission granted conditional approval for Translarna. It is the first licensed drug that can treat an underlying genetic cause of Duchenne ever to have been approved anywhere in the world. It was a landmark decision for the community of those suffering from Duchenne.
Translarna treats boys whose Duchenne is caused by what is known as a nonsense mutation—if anyone wants me to explain that, I had better leave now! The mutation accounts for 10% to 15% of the boys who suffer with Duchenne. The truth is that those young men have no chance of being cured of the disease once they have it, but we try to enhance and extend their lives. Some great work has been done in this country and even better work done in countries such as Denmark. Translarna will have a huge impact on that 10% to 15% of the boys suffering from the disease. To qualify for the treatment, however, young boys must be aged over five and still walking. Clinical trials indicate that Translarna could slow the progression of the condition and keep the boys walking for longer. It has already been made available in European countries such as Spain, Germany, France and Italy.
We understand that there are different regimes and that we have to go through our regime. Translarna was being assessed by NHS England, which has the final decision on whether the drug will be approved and, as we hope, funded for boys in England. The families understood clearly that a decision was to be taken last September, making the treatment—really important for the young people affected—possibly available from April. Unfortunately, however, due to the threat of a legal challenge, NHS England has stopped the assessment of the drug while it reassesses its process. An internal debate within NHS England has stopped the assessment of a drug that could mean at the very least that a number of those boys could be walking for much longer than was otherwise thought possible.
Yesterday, more than 100 families, along with a lot of colleagues from both this House and the other place, came together to lobby and deliver a petition of over 23,000 signatures to the Prime Minister in Downing street. To his credit, he answered my question yesterday positively and also met us outside Downing street, where he gave a commitment to the families that he would do all he could, adding that he would speak to the Secretary of State before going to America. He was supportive of what we are trying to do.
The reality is that we cannot allow an internal discussion within NHS England to stop the treatment. The difference could literally be that the boys concerned will stop walking when that does not have to happen. I could not personally live with that. We must do something about it.
I ask the Minister to give us an assurance today that the Department of Health and NHS England will work together to see whether they can move the situation forward. Yesterday, the Prime Minister said—he did not mean it disrespectfully—that he had given NHS England a lot of work to do recently. We all understand that. Although we might kick around in here and have an argument between ourselves about it as if it was a political football, the NHS is about helping people such as the young people I am talking about. It cannot save their lives, but their lives can be improved and, we hope, extended. Translarna could do that, so I hope that between us we can find a way to make things work.
May I first add my most sincere congratulations to you, Sir David, on your recent elevation?
I will be brief. I pay tribute to the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this debate. Ahead of it, I have been contacted by an exceptional charity in my constituency, the Raynaud’s and Scleroderma Association, of which it is my privilege to have been patron for many years. That outstanding charity was founded and is based in Alsager in my constituency, and it is the only charity providing national support, research and help for people suffering from Raynaud’s and scleroderma—two debilitating conditions that affect the digits and the autoimmune system. The charity also supplies support to their carers.
I am glad to take the chance today to pay tribute to the work that the RSA does every day for people suffering from those debilitating conditions. Despite working from a tiny terraced house on limited resources, it has raised millions of pounds to fund national treatment and vital research. It has helped the country’s understanding of the conditions, as I have heard personally from clinicians and doctors. As a result, I believe that the RSA’s concerns about the proposals that we are discussing today demand a hearing.
The RSA’s work makes a huge difference to the lives of those affected by the conditions, especially those with Raynaud’s when their condition develops into scleroderma, which is rarer and more serious. The progress the association has made in research into and treatment of the conditions is outlined on its website. Its chief executive officer, Elizabeth Bevins, contacted me prior to the debate because she is concerned about the plans we are debating, which could reverse the progress that has been made over recent years on services for these rare conditions. I will quote from Elizabeth’s letter to me:
“Having followed the development of NHS England with interest since its launch…and having welcomed Specialised Services commissioning at national rather than local level as an important cornerstone of the plan to help eradicate any ‘postcode lottery’ issues, I am now concerned at the proposed changes on national commissioning for specialised services.”
She added that she shared the concerns of the Specialised Healthcare Alliance, which she thought had articulated the position well in the statement it released on the issue. That statement says:
“Specialised services are best planned on a national level–in the past patients experienced very different levels of access to specialised care.”
Elizabeth is concerned that NHS England’s plans to let local commissioners share responsibility for commissioning such complex services, thereby incentivising them to direct funding to local priorities, could result in a patchwork quilt of provision. An example is the prescription of the drug Bosentan for scleroderma. The drug can often help to prevent the formation of digital ulcers. The RSA is extremely concerned that access to that drug and others for the rare conditions to which I have referred should continue to be “equitable and consistent”.
These diseases are rare, so shared knowledge across clinicians nationwide is essential. Scleroderma affects only about 8,000 patients in the UK. The RSA has stated that
“treatment is best and most effectively made from a few specialist hospitals across the UK…who work with a patient’s local hospital to manage what can be killer diseases.”
I hope that, in continuing with the proposals, Ministers will take into account the concerns of the RSA.
It is a pleasure to see you in the Chair this afternoon, Sir David. I am sure you took huge pleasure from your ennoblement. I am also sure that you took some pleasure from West Ham’s good cup win on Tuesday night—at least we are both smiling as a result of that experience.
I congratulate the hon. Member for St Austell and Newquay (Stephen Gilbert) on the strong case that he made to the Minister. I look forward to hearing the responses of both Front Benchers to that contribution in due course. It is a pleasure to follow the hon. Member for Congleton (Fiona Bruce), who made an eloquent plea on behalf of the RSA in her constituency and nationally.
I will raise two issues. The first is sickle cell disease, an issue raised with me by two constituents who suffer from that condition and are worried that the change to local commissioning might affect the care that they receive. I promised that I would mention their concerns in my contribution today, and a simple statement of reassurance from the Minister would be very welcome.
The second issue I wish to raise—in greater depth but not too lengthily—is neurological and headache services. We have corresponded on the issue before, so I will just remind the Minister that I am chair of the all-party group on primary headache disorders. I should acknowledge the assistance that the all-party group receives from the Migraine Trust, which offers great support through Wendy Thomas, its chief executive, and Drew Lindon, who acts as our administrative secretary.
The all-party group recently concluded an inquiry into headache services in England. The Minister has a copy of our report, and I hope the shadow Minister has one as well. I put on the record my thanks to the parliamentary participants in the inquiry, as well as to the witnesses—many of them eminent clinicians—and to Hannah Verghese of the Migraine Trust, who all gave up their time to make sure that the sessions were useful and worthwhile and that the report would be a useful tool for the Government and for anybody interested in the issue.
I will not go into any real detail, but the report’s main conclusions were that there are large gains to be made in the NHS by treating headache appropriately—gains for the patient, for the NHS and for the wider economy. The report also makes well the argument for the need for
“a national strategy to improve the provision for headache sufferers in England.”
There is a lot of good provision on the ground, but it needs to be more evenly spread across the country.
Our report makes 10 recommendations. Again, I will not go into detail about them all but members of the group would like to meet the Minister and/or his officials at some point over the next few months to discuss the issues. We will also put a bid in to meet the shadow Minister and his colleagues; given that the general election is coming up, he might well be sitting in the Minister’s position in only a few months—certainly many of us expect that to happen—either as part of a new ministerial team running the country or perhaps sharing the running of the country with others, in which case the Minister might still be there. At any rate, we want to take the issue forward and would be grateful to engage with both Front-Bench teams. I have corresponded with the offices of the Minister and the Secretary of State for Health, on 12 January and 23 July last year, respectively, raising some of the issues that we have identified.
Headache disorders cost the UK economy an estimated £5 billion to £7 billion per annum. They are the most common neurological reason for accident and emergency attendance, with more than 19,000 finished emergency admissions in 2012-13. Indeed, 90% of the public are affected by a headache at some point, and approximately 6 million people live with migraines. In 2012, the Public Accounts Committee identified that 70% of clinical commissioning groups have not produced a needs assessment of people with neurological conditions and have no plans to do so.
The Minister will have seen the Neurological Alliance’s report, “The Invisible Patients”, which included the findings that only 14.7% of CCGs have assessed local costs relating to the provision of neurology services; only 20.4% of CCGs have assessed the number of people using neurological services and only 26.2% have assessed the prevalence of neurological conditions in their area; and only 33% of CCGs obtain vital feedback from patients about the neurological services that they commission. The report sets out a number of recommendations in response, which I am sure the Minister has seen.
I should declare an interest: I am a sufferer of trigeminal neuralgia. I have personally accessed the neurology services of the Barts Health NHS Trust, and had neurosurgery at the National Hospital for Neurosurgery and Neurology at Queen square in 2009. I am grateful to all the clinicians who assisted me, as well as to the Trigeminal Neuralgia Association UK—TNA UK—a charity that tries to help suffers and their families and campaigns on the condition.
In conclusion, we need a national strategy, including an appropriate and targeted public awareness campaign for primary headache disorders, as well as better diagnosis and treatment by GPs, specialised clinics and clearly defined local headache pathways. If we had that, the burden of headache disorders might finally receive the attention that the all-party group thinks would be helpful for individuals, the NHS and society.
Time is short before the general election, but I repeat my request for a meeting, which, I assure the Minister, would not take long. We would be grateful if he found half an hour in his diary before the end of March. We extend that request to the shadow Minister as well, so that we can take these issues forward and try to give greater assurance to those who are suffering that matters are being taken seriously.
It was indeed a good night for Essex, Sir David; I congratulate you on your well-deserved elevation.
I want to endorse all the comments made by previous speakers. Members will have gathered from my intervention that I do not think that we should look at this matter in isolation. The national health service has a problem: on the one hand, we want local decision making, but on the other, that local decision making is occasionally counter-productive to the interests of patients, so a national framework is required. Clearly, if we have two people in one area and two in another and the decisions are made locally, those decisions could well be different. We all have experiences with mainstream medical services where the postcode lottery kicks in; I fear that that will be exaggerated on a bigger scale for the individual, even though the numbers of people with each condition in each constituency are not that great.
I want to reinforce the arguments that have been made. Last year, I introduced a debate on long-term conditions and prescription charges and concentrated on cystic fibrosis, a condition that I have raised throughout my parliamentary career—I hope that I will be able to continue to do so after May. The point I want to make is that those who have chronic illnesses have not chosen to have them yet, as the Prescription Charges Coalition—a group of more than 30 organisations—has identified, when it comes to prescription charges, there is discrimination against those to whom mother nature has not been kind. At the same time, the NHS falls over itself to assist people who are guilty of self-inflicted wounds, by which I mean illegal drug taking, binge drinking and so on. We have an extraordinary situation in which the NHS gives greater attention, time and resources to those who have brought about their own ill health than to those who did not choose theirs.
My message to my right hon. Friend the Minister is that a powerful case has been made by my hon. Friend the Member for St Austell and Newquay (Stephen Gilbert) and others and that he should look at the case I made in my Adjournment debate last year on prescription charges, with the emphasis on cystic fibrosis. What we have heard today about the ongoing inquiry tells me that the NHS is in danger of moving in the wrong direction. I hope that the Minister, my good friend and fellow East Anglian colleague, will ensure that, regardless of party politics, we are not going to see a worsening of the discrimination currently experienced by many people with chronic illnesses—it is already bad enough.
I too congratulate you on your knighthood, Sir David. I am not quite sure what it is about Essex MPs and knighthoods, but perhaps we could be let in on the secret. I congratulate the hon. Member for St Austell and Newquay (Stephen Gilbert) on securing the debate. I would like to start with an apology, because it always seems a good thing to start with: I am sorry, but I will not be present for the wind-ups due to a long-standing agreement. However, I will be really interested to read the report of what everyone has to say.
I would like to concentrate my comments on brain injuries and the way in which any reconfiguration of commissioning might affect brain injury services. In addition to representing people in my constituency who have been affected by a brain injury, my interest is twofold. First, I was a member of the Health Committee when it conducted its inquiry into head injury rehabilitation. Our report was published in 2001, and our findings demonstrated the importance of good quality rehabilitation in improving patient outcomes. Rehabilitation can also save the NHS money by enabling people to move along the care pathway from acute care services, when appropriate, and, in the longer term, by reducing ongoing dependency and care costs. It is a shame that rehabilitation services remain under-funded all these years later. That must be addressed, regardless of commissioning arrangements.
My second interest is that my constituency contains the London office of Headway, the brain injury association, the estimable chief executive of which, Peter McCabe, has been my friend, colleague and constituent for longer than either of us would care to remember. The charity supports individuals and families affected by brain injury and, as such, is ideally placed to comment on the discussion on commissioning arrangements. As many of us know, brain injuries can leave people with a broad range of cognitive and physical issues, including communication, memory, emotional and mobility problems, each of which requires specialist yet integrated treatment and rehabilitation from the earliest possible stage to enable the best recovery.
In such a complex area of health care, the views of organisations such as Headway that provide services to people with brain injuries are of vital importance in discussions about how specialised commissioning might be reconfigured. Headway’s front-line services include a nurse-led helpline that takes thousands of calls each year, and acute trauma support nurses who provide valuable assistance to families of loved ones in the acute stage of care. It also has an emergency fund that provides vital financial support to families who are unable to afford to visit their loved ones in specialist brain injury units, which are often many miles from the family home, along with a network of more than 125 groups and branches across the UK that provide local support and services to brain injury survivors and their families.
Ahead of this debate, Headway reported to me that it has had discussions with experts in the field of acquired brain injury about the proposals, and that there are differing views as to whether changing the way in which brain injury services are commissioned would be beneficial or detrimental to brain injury patients. Some have questioned the wisdom of another reorganisation at this stage, yet most accept that encouraging those with commissioning responsibility at both a national and local level to co-operate and develop joined-up pathways of care for patients could provide real benefits. There is a great deal of concern, however, that the driving force may be to reduce expenditure. I seek assurances from the Minister that the potential reconfiguration of commissioning is about improving patient outcomes rather than cost-cutting.
The present level of detail on how brain injury commissioning changes may work in practice is also of concern. Without that, it is difficult for organisations representing patients to provide views as to what such changes might mean. Experts suggest that it could be helpful if it led to more investment in rehabilitation services. That is supported by an article in the Evening Standard this week quoting Robert Bentley, director of trauma at King’s College hospital, who explains that trauma units can struggle greatly to move patients back to local rehabilitation due to a lack of rehabilitation beds, and that that leads to a blockage in trauma units. Rehabilitation services must be invested in at a local level to encourage patient flow at a national, regional or tertiary level.
I ask that NHS England provides more detailed information on how any reconfiguration of commissioning may impact on survivors of a brain injury. I also ask that any move to restructure is subject to consultation with appropriate and relevant organisations; it is important that experts and patient groups are able to feed into the plans, so that the interests of patients are protected and consideration is given to the law of unintended consequences.
It is also important to state how imperative it is that CCGs, if they are to become more involved in the commissioning of specialist services, are supported to increase their expertise in these areas of health, so that they are able to make effective and well-informed decisions. That would also help to ensure a consistent quality in services across the country.
To pick up on the points made by my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), I note that the Neurological Alliance highlighted that only 26.2% of CCGs responded to its audit looking at what specialist levels of understanding they have in that area of care, and that just 20.4% had explored the number of people using local neurological services. If the approach to commissioning services for these conditions is to be changed, CCGs will need to increase their knowledge of the level of need in their areas and the types of provision required. That might benefit from input from experts and patient groups, and should brain injury services move to a different form of commissioning, organisations such as Headway and its local groups should be engaged as part of the process.
I conclude by saying that the detail of these plans and how they are executed if they are put in place are of vital importance—as is always the case, the devil will be in the detail. The reality is that any one of us may suffer a life-changing brain injury. Those facing such difficulties need the assurance that they will receive the best possible acute care and rehabilitation to maximise their recovery, regardless of who commissions or pays for it.
I congratulate you on your knighthood, Sir David, and I also congratulate you on West Ham’s success. I tend to follow West Ham, as my little nephew, Oliver, is a great fan, but as I gather you are next up against Bristol City, I am afraid that this is one occasion when I am not allowed to express support.
I am pleased to follow my colleagues in speaking on this issue. I know that my hon. Friend the Member for Blaydon (Mr Anderson) has had to leave for the debate in the main Chamber, but I want to mention briefly the Muscular Dystrophy Campaign. It has spoken to me many times about the need for the national commissioning of specialised services, so it is obviously concerned that that may be under threat. I have a constituent with Duchenne muscular dystrophy, so I am pleased that my hon. Friend brought up the issue of access to Translarna.
I was in the Chamber for the start of the debate on contaminated blood. We heard some very sad stories about haemophiliacs contracting hepatitis C and HIV/AIDS as a result of receiving infected blood. Haemophiliacs are another group who benefit from these services, as indeed do people with HIV/AIDS.
I particularly want to raise some points today on behalf of the Cystic Fibrosis Trust, which, as the Minister will know, does excellent work. It has already been mentioned by the hon. Member for Colchester (Sir Bob Russell). Cystic fibrosis is not among the rarest of conditions; it is actually the most common life-threatening, inherited disease and affects over 10,000 people in the UK. However, it is very complex, and because of the associated conditions that go with it, it requires very much a co-ordinated holistic approach. Patient care includes physiotherapy, nutrition, antibiotics and, often, a long wait on the lung transplant list, which is something that I have raised in the Commons before.
Cystic fibrosis patients need a dedicated team of specialist consultants, nurses, dieticians, physiotherapists, pharmacists, social workers and psychologists. Their susceptibility to cross-infection also means that they need to avoid other cystic fibrosis patients, so it is particularly difficult to provide services for them. I have spoken before about how invaluable it is for cystic fibrosis patients to have a dedicated service, and we are very fortunate in Bristol to have the Bristol Adult Cystic Fibrosis Centre, and also a special paediatric unit at Bristol children’s hospital. In recognition of the different needs of patient groups at different ages, NHS England has two service specifications for CF—one for adults and one for children to ensure that the services meet their needs.
I want to talk briefly about the concerns that the Cystic Fibrosis Trust raised with me about the consequences of co-commissioning. Specialised services, such as Bristol’s, are becoming increasingly important as the life expectancy for people with CF increases and as patient numbers expand. It used to be very much a childhood illness, which is why the issue of people with cystic fibrosis having to pay prescription charges is an anomaly. It used to be that they did not survive into adulthood, so the issue of paying prescription charges did not come up, whereas now, their life expectancy is much longer, although it is still very much a serious illness.
When I visited Bristol Royal infirmary to look at its unit last year, it was clear that capacity and managing its bed allocation was becoming a bigger problem because there are more patients around. Arguably, that means that specialised commissioning will become increasingly important. The Cystic Fibrosis Trust is concerned that a move towards co-commissioning, rather than expanding the availability of specialised units, will be a retrograde step for the care and treatment of CF. Given the proposal to incentivise CCGs to reduce spending on specialised services, the trust is concerned that a move to co-commissioning is
“a veiled attempt at cost-cutting”.
The Cystic Fibrosis Trust argues that the current arrangements have delivered economies of scale through the focus on fewer, larger units; that they facilitate clear accountability in commissioning; and that they provide, together with the clinical reference group, the potential for continuous improvement and innovation. They also ensure consistency and equity of access across the country, something that again, is very much missing from the organ transplant system, and the trust has been campaigning for some time for a national lung transplant allocation system. It has also been highlighting the issue of national access to drug therapy, which will become increasingly important if, as we hope, new drugs are developed. The trust warns that, without the necessary national approach, we will see worrying postcode lotteries, and that
“overstretched clinical commissioning groups may not be able to support the level of service required in specialist centres, complete with integrated patient pathways and multidisciplinary expertise.”
I want to end by asking the Minister a number of questions. He may not be able to reply to them today, but I would be grateful if he could pick them up in writing. Given that CF care is provided by a single, multidisciplinary team, funded by a year-of-care tariff, what would co-commissioning look like for cystic fibrosis services? Just how will co-commissioning work for a condition such as CF without undermining the key principles of the existing nationally commissioned service—avoidance of duplication, the consistent standard of care and facilities across the country, and a joined-up approach to future treatments? If cystic fibrosis is co-commissioned, what aspects of the service would be commissioned nationally and which would be commissioned locally? Is the Minister at all concerned that local CCGs may not have the expertise to commission aspects of care for a condition as complex as cystic fibrosis?
To conclude, given the vulnerability of patients who currently rely on specialised commissioning, I hope that the Minister will work with organisations such as the Cystic Fibrosis Trust and other members of the Specialised Healthcare Alliance, and give due consideration to their call to maintain mandatory national service standards.
May I be the next person to congratulate you on your elevation, Sir David? You have always been very kind to me since I entered Parliament in 2010, so I think it is well deserved.
I thank the hon. Member for St Austell and Newquay (Stephen Gilbert) for bringing a very timely debate to the Chamber. He has given us all a shove to make us realise how important this issue is. We have all had to concentrate on, and speak to our constituents about, what is going on. I also want to say something about the two Front-Bench spokespersons, who are probably two of the nicest Ministers and shadow Ministers. It is, of course, always a pleasure to follow my hon. Friend the Member for Bristol East (Kerry McCarthy).
Every hon. Member making a speech here today speaks on behalf of people who suffer from rare conditions because those people cannot do so themselves. They have complex conditions; by their very nature, they are not run of the mill. They require highly specialised and very skilled clinical responses. Many other hon. Members have concentrated on specific areas. As a member of the all-party group on epilepsy, which also considers related conditions, I shall focus on that. Epilepsy encompasses so many variations, and there are a lot of unknowns about these conditions. Sometimes epilepsy is a forgotten condition because there are no shops on the high street to remind us of how many people—children and adults—suffer from it.
The document from Epilepsy Action’s trawl around all the CCGs was put on my desk and it explains why the debate is so important. I am not sure whether the Minister has seen it. It is entitled “Epilepsy in England: The local picture”. It is quite alarming. I shall highlight just three of the major issues. Epilepsy Action says that only 10% of CCGs have a written needs assessment for people with epilepsy; just three out of 140 health and wellbeing boards are making plans for people with epilepsy; and 78% of CCGs have not developed, or do not intend to develop, a needs assessment for people with epilepsy.
According to epilepsy charities, there are also problems with the current national service specification for adult specialised neuroscience services. The problem is that it is an interim document. It was produced in 2013 and requires updating. More importantly, it does not specify which parts of epilepsy services are specialised and which are not. There seems to be a lack of accountability between CCGs and NHS England as to which are neurological services. The CCGs are interpreting, wrongly, that they have no responsibility for some neurological services but they have for others. That is why this debate is so important. How does the Minister intend to deal with that discrepancy? Will the specification be updated, and can he review that before he rolls out the programme?
The situation makes a mockery of my final point, which is about the tariff. NHS England and Monitor will bring in marginal rates of 50% for specialised services above the stated baseline. That, in effect, means that access may be rationed. Worse still, CCGs, if they underspend on their budget, can keep that money. That means that there is a perverse incentive not to commission the more expensive rather than the less costly procedures. Let us think about the kind of procedures required for epilepsy. Brain surgery is complex and highly skilled, and sometimes it is the only option for people with the condition.
I am not sure why specialised commissioning needs to change. I do not know whether the Minister is aware of the survey that the Specialised Healthcare Alliance carried out among patient organisations, expert clinicians and the industry in late 2014. It says that 90% of respondents want their service as part of specialised commissioning, not co-commissioning, and 82% do not want any change. I urge the Minister to listen to those patients and to those affected.
I, too, congratulate you on your knighthood, Sir David, which is well deserved. It is a pleasure to serve under your chairmanship. I also congratulate the hon. Member for St Austell and Newquay (Stephen Gilbert) on launching and promoting this very important debate.
I want to speak up for robot-assisted surgery, which should be the subject of national commissioning and should not be localised. The case for it is very powerful indeed. Some 500,000 robot-assisted surgical procedures took place in the world in 2013, and 5,000 of those were in Britain—but 5,000 is quite a small number when compared with the total number of operations across the whole field of health during a year. These operations are very specialised; a small number of very specialised surgeons do them. Clearly, such surgery is wholly inappropriate for local decision making, local funding and local commissioning. My hon. Friend the Member for Bristol East (Kerry McCarthy) made the point very strongly: these operations should be part of a national service, where we can get economies of scale and a focus on centres of quality and expertise.
The operations are used, among other things, to treat patients with prostate cancer, kidney cancer and bladder cancer and, to a lesser extent, in the areas of colorectal surgery and gynaecology. Having seen some of the operations on film, I know how incredibly precise and difficult they are and what miracles can be worked by robotic surgery. It cannot be done by human beings: however brilliant a surgeon is and however delicate their hands are, they cannot be as precise as a robot. Robots will increasingly become part of the way we operate on human beings more broadly.
My reason for being so interested in this issue is personal. Over the last four years, I have been invited to speak, briefly, at an international symposium on surgical robotics at the Royal Geographical Society. It has been led by my noble Friend Lord Darzi, of another place. As we all know, he is a gifted and brilliant surgeon himself. I make a brief address at the beginning—not because I am a medic myself or know anything about these things, but because my late father was Professor Harold Hopkins FRS. He was a gifted scientist who designed the first successful optical endoscopes. Flexible fibre optics were his, as were rod lens cystoscopes and all the endoscopes that followed from them.
If anyone has ever had a colonoscopy or a gastroscopy—or, indeed, had their bladder inspected through the urethra—they will have had one of those instruments poked inside them. I have experienced more than one of them, but fortunately I was in perfect health, so I was pleased about that. I also had the unusual experience of seeing the first ever clear picture of bladder cancer; my father showed it to me when the first endoscope was used to take it. It was an historic moment.
The point I want to make is how important it is that these procedures are promoted within the national health service, because Britain must be at the forefront of this technology. We have brilliant surgeons and brilliant designers and scientists designing these things, but when my father first invented his cystoscopes, his endoscopes, he could not get them produced in Britain. Eventually, he met a man called Storz in Germany, who manufactured the endoscopes and made millions of pounds from them.
The Deutsches Museum in Bonn has a case devoted to those instruments in a part of the museum for foreigners who have made a contribution to the German economy. It could all have been done in Britain, but it was not. I fear that if we do not keep funding this cutting-edge technology—“cutting” is perhaps an unfortunate word—we will lose our position in the world at the head of all these developments. It is so important for Britain, as an economy, that we sustain these things, but they will not be sustained if we have penny-pinching local commissioning, which will undermine the procedures and their availability.
These are very serious concerns. Sadly, my father died of prostate cancer himself some 20 years ago. There is a hereditary component in prostate cancer, so I have a personal interest in making sure that all these operations are available and that we have the best possible technologies to deal with the disease.
A recent front-page report in The Guardian or The Independent—I forget which—showed that prostate cancer treatment varies enormously from area to area, and death rates are higher in some areas than in others because some treatments are not available nationally. Some treatments, such as implanting into the prostate small radiation-generating components that kill off cancer cells, are not available to all sufferers, and they should be.
There are all sorts of reasons for national commissioning to ensure consistency of provision across the country and that people do not die unnecessarily of dreadful diseases. There is a powerful case in many other fields for national rather than local commissioning. We are talking not about hip replacements and tonsillectomies, but about very specialised operations, sometimes for rare diseases and conditions, using technology that is not available in every area. There should be national centres for such things.
That is my case, although I could speak at much greater length. I want to finish on the question of funding for the health service. There has been a lot of press comment and alarm about the state of the health service, and quite rightly so. I do not speak for my Front-Bench team—I only wish I did, and from time to time I try to persuade them that I should—but I believe that NHS spending must be increased. We spend at least 2% less of GDP on health than do the French or the Germans, and 2% of GDP is the equivalent of approximately £60 million per constituency. I would like to see an extra £60 million spent on health in Luton North, as I would in Luton South and in every other constituency. That would simply match the current situation in Germany and France.
The NHS does a wonderful job and is incredibly efficient, despite what people say. It has a high level of productivity, although that is being damaged by fragmentation and creeping privatisation. It is a remarkable organisation, envied across the world. It is still, in many ways, the best health provision in the world, but it is in danger from underfunding. I want us at least to match what the French and Germans do, especially as our economy is now evidently stronger than theirs.
There is a possibility of spending more. The population regularly indicate in polls that for certain areas, particularly health, they would be prepared to pay a little more tax to make sure that they are safe. I look forward to the next Labour Government, who should be in office in the next few weeks. We will then be able to move forward and properly fund the NHS.
Thank you, Sir David. I thought that I would probably be next. Your knighthood was the very least that you should have been awarded; I think that that was even more creeping than everybody else’s contributions. I thank the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this important debate.
I will confine my comments to stem-cell transplants. As many other hon. Members have done, I declare an interest, because I am the joint chair of the all-party group on stem-cell transplantation. My eldest son, Max, had a stem-cell transplant some seven years ago, so I also speak from personal experience. Approximately 1,600 patients a year receive a transplant from an unrelated donor or a family member. Transplants are certainly not an easy option. When my son had one, someone asked me, “Why did you take the easy route?” If that is the easy route, I cannot imagine what the difficult route is like. It certainly was not easy; it is a highly risky process and there remains a high chance of mortality. Success rates have improved, however, and great progress has been made over the years. For many patients, a transplant is the only choice that they have to save their lives.
Most blood cancer patients will receive the protocol of chemotherapy and other drug treatments. That will be the preferred route for most patients, and most now have very successful outcomes. For some, however, the protocol is not appropriate and it will not work. Depending on their particular condition, the long-term outcome under that therapy is that they will relapse, so transplant is the only option. Some patients for whom chemotherapy was seen as the correct option will also relapse, and once that has happened, transplant is the preferred option. I emphasise that that is the case for a limited number of people.
Patient experiences and outcomes from transplant are very varied. Some will suffer a whole host of problems, and some may not. There is not a uniform outcome for every patient. The transplant episode, from an NHS point of view, is defined as a period beginning 30 days before transplant and ending 100 days after transplant, and services are commissioned nationally. After that period, funding for patient care returns to the local level, although patients will probably still get ongoing treatment at specialist transplant centres. The period of 100 days may be appropriate for many patients, but it is not appropriate for all. Some patients will have a very different experience and respond differently, and they will not come out the other end fine.
More than 50% of patients will experience graft-versus-host disease. Some minor graft-versus-host is expected, and it at least shows that the transplant has taken and that something is going on; it is fighting to establish a proper graft. If it gets out of hand, however, it can cause organ failure and, in the worst cases, death. The severity of the disease depends on how close a match the transplant is. The best match is always sought, but it can sometimes be difficult. I put on record the great work done by Anthony Nolan in getting people on the register. I emphasise that this is one of the few areas in which it is possible to save a life by giving something without having lost one’s own life, and it is an incredible experience.
Anthony Nolan asking people to go on the donations register is a wonderful aspect of life in the 21st century. Does the hon. Gentleman agree that there is a specific issue for people from ethnic minorities, and specifically for people of mixed ethnicity, because the number of people who can be matched is so small?
I agree, and that is a fact that few people know. A white person has a 70% to 80% chance of finding a match. For some ethnic groups, the chance of finding a match can be as low as 30%. For those of mixed race, depending on what that mix is, it can be even worse. We need to do much more work in those areas to try to explain that. It is the same with giving blood, where there is also a problem. The two are connected, but there is a big problem there, and we need to do a lot of work on it. Transplants are also being used for sickle cell disease, which is an important area that has already been mentioned.
Many of the graft-versus-host issues appear during the early days, but that is not always the case. Flare-ups can happen many years later. Hopefully they will become less severe as time goes on, but we cannot say that they will stop at a particular time—100 days or any other arbitrary figure. GVH is not the only problem; most transplant patients will contract a series of infections due to their immune system being compromised as a result of the treatment they have to receive to ensure that the transplant is in the best position to take. Those infections might not prove particularly dangerous to the rest of us, but they could prove fatal to a transplant patient. In the longer term, secondary cancers are another issue that has to be faced. However, without the transplant these patients would not be alive even to think about such issues, so we always need to put matters into proportion.
We have talked a lot about the physical impact of a transplant, but the psychological effects are often ignored, and there is perhaps a lack of support. Transplants are a difficult process, particularly for children. My son was in hospital, off and on, for two years, which is a big chunk of a nine-year-old’s life. Even for adults, transplants are a major step. We need to do a lot more to address the psychological effects by providing better counselling. Some support is provided in hospitals, and I have experience of that, but once people leave hospital they have to search long and hard to get support. It is a fact that transplant patients have a higher rate of suicide than the rest of the public.
I visited the cystic fibrosis unit at Bristol, and one of the key problems for people from remoter, rural areas is accessing the ongoing support, or even the drugs, that they need. In the cities there may be a concentration of patients with the same illness or a unit that specialises in treating it, and one of my concerns about co-commissioning is that a CF patient somewhere in Devon or Cornwall will have very few other patients nearby. The problems that such patients already have with being remote from the hospitals that treat them will be exacerbated if there is a local element.
I totally agree. Thankfully, not many people have these conditions, so particularly in rural areas, someone might be the only person with the condition, and accessing support may be much more difficult.
After the 100-day cut off it becomes far more problematic for both the patient and the health provider. The term “postcode lottery” has been mentioned a lot today, and it is certainly the case when accessing support. After such a traumatic procedure, a postcode lottery is the last thing that people need. We must move away from the arbitrary 100 days, which does not fit what the patient actually needs. We need a more flexible approach that focuses on the patient, rather than just some figure that we seem to think may or may not cover the majority of people.
Support should go arm in arm with a proper transplant pathway that addresses how we look after transplant patients after those 100 days, or whatever figure is used, for as long as necessary. I have always been struck by the fact that we spend a vast sum on each transplant on the medical and hospital side, probably hundreds of thousands of pounds by the time we finish, but when the patient leaves that environment, the level of support is very poor. We need a more joined-up approach, particularly for children. A few years ago I spoke in an Adjournment debate in the House on support for children who have had cancer and are returning to the school environment. I was shocked that there are no national guidelines on how we reintroduce children. It is a scary, traumatic process not only for them but for their classmates, particularly if they are very young. Their classmates might suddenly see a child they have not seen for a while looking very different. Some schools are very good and some are absolutely hopeless in the support that they give. I am going slightly off the subject but the Department of Health and the Department for Education must work together, rather than arguing about who is responsible for providing such support.
My last point concerns patients who have had a transplant but unfortunately have relapsed. A transplant is not an easy option, and it is traumatic enough, but when the transplant fails, perhaps a year or two down the road, the patient is faced with a bleak outcome unless another transplant is available. Indeed, when a transplant is first performed, a proportion of the cells will be kept to have another go, if I can put it in those terms, in the event of such an outcome. That will obviously apply only to a limited number of people, but for that limited number of people it is their only hope. In the past we have seen that a second transplant tends to go ahead because the number of people affected is not particularly vast, but in England a second transplant now has to be provided by the NHS England individual funding request process. I understand that in recent months a number of those requests have been declined. I also believe that NHS England does not intend to address the issue until April 2015 at the earliest, although it recognises that there is an issue. When it does, I do not know how long it will take to decide what to do or, indeed, what the outcome will be. That is unacceptable. It is not too dramatic to say that lives are being lost because of that delay and this unnecessary process.
It is a pleasure to serve under your chairmanship, I think for the first time, Sir David, although you do look an awful lot like someone we used to call Mr Amess. I extend my genuine thanks to the hon. Member for St Austell and Newquay (Stephen Gilbert), whom I congratulate on securing this debate and on raising these issues in such detail. That is extremely important.
I pay tribute to all hon. Members who have spoken today. I single out my hon. Friend the Member for Luton North (Kelvin Hopkins), who made a superb contribution. He will be pleased to know that a Labour Government would increase spending on the NHS, more so than any other party. I am keen to give my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) the engagement that he seeks at a time of his convenience. I commend my hon. Friend the Member for Alyn and Deeside (Mark Tami) for his compelling personal testimony. Every contribution has been very important. I also pay tribute to the Backbench Business Committee for ensuring that this and other important debates go ahead.
[Mr Peter Bone in the Chair]
Tens of thousands of people across the country rely on specialised health services. Far from being for the very rarest conditions, those with relatively common illnesses and diseases regularly depend upon specialised services. Those conditions and services include, but are by no means limited to, epilepsy, haemophilia, many cancers, HIV and cystic fibrosis. The list also includes fertility treatments such as in vitro fertilisation. The hon. Member for St Austell and Newquay gave a much more detailed list. The issue not only covers a wide range of conditions but accounts for £14.6 billion of the NHS budget, meaning that more than £1 in every £7 spent by the NHS is on specialised health care.
How those services are commissioned and provided is not a peripheral issue. It has a meaningful impact on the health and well-being of many thousands of families throughout the country. As we have heard today, we represent many constituents who require such specialised services. That is why it is right that these issues are debated in detail.
What is of real concern to those of us who use the NHS is the ability to access high-quality care and services. While access is available, many will not be concerned by the commissioning process, but widespread changes to the process could damage services and therefore patient care. The fundamental issues being debated today are the proposed co-commissioning of specialised services and, as has been mentioned, the proposed tariff change for these services. Each presents challenges that the Government must address. I am sure that the Minister will speak at length about how it is now the responsibility of NHS England, but Government must share responsibility for services and their performance. The public and the House expect it.
The Health and Social Care Act 2012 made NHS England the sole national commissioner for prescribed specialised services. The intended effect was to ensure that access and services were uniformly available across the country. It was meant to ensure that all patients would have access to available treatments. The rationale behind the change was that local funding and commissioning of specialised services had led to variable access and quality for patients.
National service specifications ensure that all patients, no matter where they live, have access to the same standard of care. They are currently underpinned by national access policies, expert advisory groups and national accountability for services. The proposed changes that we are discussing and the adoption of co-commissioning could pose a risk to those national standards. Many stakeholders have expressed concerns that specialised services are not easy to plan for on a local level. The Specialised Healthcare Alliance has said that
“given the highly variable incidence of rare and complex conditions, individual CCG allocations will not be aligned with actual need in-year.”
The Government should give assurances to hon. Members, stakeholders and patients about plans to change how such services are commissioned. For example, where will the budget rest? Will it be divided between NHS England and local clinical commissioning groups? Will clinical commissioning groups have any degree of autonomy in decisions about which services to commission in their locality? Why does the Minister believe that the changes will not result, as hon. Members have said they will, in a postcode lottery of services where patients in one area will have no access to some services on which they rely, but other patients will?
On 30 September last year, NHS England published its commissioning intentions 2015-16 for prescribed specialised services. Section 11 states clearly that NHS England has recommended to the prescribed services advisory group that renal dialysis should no longer be commissioned by NHS England and should instead be commissioned by CCGs. The National Kidney Foundation and its members have expressed deep concerns about the change. Patients are anxious about how the changes will affect services that keep them alive. There are 52 centres at present, each with a number of CCGs. How would those arrangements change as a result of the new commissioning framework?
The Cystic Fibrosis Trust has also echoed similar concerns. It is worried that the result of the changes could be
“ a lack of accountability and wide differences in provision of care across the country.”
Will the Minister reassure those stakeholder groups that that will not be the case as a result of the proposals?
I apologise that I could not be here for most of this debate, but among the conditions that my hon. Friend is mentioning, I urge him and the Minister not to forget sickle-cell anaemia. Sufferers feel that there is a damaging variability in the quality of treatment available throughout the country and feel that a move away from national commissioning to local-only commissioning might exacerbate that problem.
I thank my right hon. Friend for that intervention. He will be pleased to learn that other hon. Members have made that point as well. Sickle-cell anaemia and the needs of people with that condition must be at the forefront of commissioning intentions and guidance.
It is absolutely clear that there is widespread opposition to the changes among key stakeholders. When the Specialised Healthcare Alliance conducted a survey of patient organisations, expert clinicians and industry representatives, asking for their views on specialised commissioning, 90% of respondents preferred their services to remain part of specialised commissioning. Co-operation between NHS England and CCGs should be welcomed in order to ensure best outcomes for patients, but wherever there is a risk that provision could suffer, NHS England must clearly retain sole responsibility for such services.
Patient care is central to the debate, as it is to all health debates. CCGs could not accurately predict the demand on some key services across a small population, so they are not in a position accurately to commission those services. Many CCGs are already overwhelmed; are they truly capable of doing what is being proposed? The ability to commission effectively will inevitably differ from CCG to CCG, which runs contrary to the initial intentions behind specialised commissioning.
Another concern is the speed with which the proposed changes will be implemented. NHS England plans to begin implementing co-commissioning arrangements in April this year, but it has yet to confirm which services will be co-commissioned. Such fog is damaging for patients and medical professionals alike. The Government and NHS England must be clear about their intentions to allow for proper planning and effective service provision. Perhaps the lessons of the 111 fiasco, for which the Minister was in no way responsible—the service was rolled out even though Ministers knew it was not ready—should now be heeded. These are real concerns expressed by those who will be most affected by the changes, and I hope that the Minister will reflect on that.
On the proposed tariff changes, in November 2014, NHS England and Monitor published a consultation notice on the national tariff payment system 2015-16. The consultation notice included a proposal for a 50:50 gain and loss share arrangement between NHS England and providers of acute prescribed services, meaning that for any service whose value exceeds national base levels, providers would receive payment only for the national base plus 50% of the difference, whereas on any service costing less than national base levels, the commissioner could save 50% of the difference between the actual value and the national base. That will give commissioners a financial incentive to restrict access to treatments for non-clinical reasons, which I find unacceptable.
Given the financial difficulties facing many CCGs throughout the country, that incentive might proving damaging and counterproductive in some cases. Will the Minister commit to undertaking an impact assessment on the tariff change and publish that assessment? If the tariff change has any detrimental impact on patient care, it cannot continue. I hope that when he responds to the debate, he will tell us whether he accepts that view. Will he also consider the views of the specialist hospital network? There is potential to do real damage to such hospitals: not only to the service that they provide, but to their research and development work as well, as my hon. Friend the Member for Luton North mentioned.
The Government’s engagement with stakeholders on health policy throughout this Parliament has been woeful. At best, it has been characterised by a refusal to engage in discussions about what is best for services, professionals and patients; at worst, by wilful ignorance of what experts, clinicians and patients need. A “carry on regardless” attitude has permeated most Government policy across all Departments, but nowhere is it more prevalent than within the national health service. The proposals represent the end of “no decision about me without me”. Stakeholder after stakeholder is calling on the Government to rethink their plans for the commissioning of specialised services.
The 2012 Act is seemingly never-ending; it appears to be changing yet again. The NHS has been plunged into never-ending reorganisation. It is an object lesson in bad law. Again, in fairness to the Minister, that happened before he arrived in post. Let us try to restore consensus on this issue and give commissioners the comfort, certainty and predictability that they and patients deserve. Let us put patients first and stop what could be a retrograde step. I look forward to the Minister’s response.
It is a pleasure to serve under your chairmanship, Mr Bone. Your arrival has removed the opportunity for me to be accused of sycophancy along with everyone else who has commended your predecessor in the Chair on his knighthood. None the less, I join in congratulating him, even in his absence. It is good to see you this afternoon.
I congratulate my hon. Friend the Member for St Austell and Newquay (Stephen Gilbert) on securing this debate. His speech was impressive and compelling in making his case, and I hope that I can go some way towards reassuring him. However, I am happy to discuss with him further the concerns that he rightly raised, to ensure that commissioning is done in the best possible way.
Various hon. Members said that any change should be based only on improving care, not simply on cutting cost. Of course, everyone needs to be engaged in the debate about how we make the most effective use of money in the NHS, but we should not do things that damage care, simply to cut cost.
Before I go into the detail of my response to my hon. Friend, let me respond to some of the points made by other hon. Members. I will write to all hon. Members who have participated in the debate to deal with all the points of substance that have been made. The hon. Member for Bristol East (Kerry McCarthy), for example, made a number of key points at the end of her contribution. Hon. Members have had a good opportunity to raise concerns about specific conditions and patient groups, and they have done so constructively.
The hon. Member for Blaydon (Mr Anderson) raised important concerns about neuromuscular care and mentioned the Newcastle centre, and I would be happy to see him at one of my Monday evening MP advice sessions to discuss his concerns further. He also raised concerns about the drug Translarna. My colleague, the Under-Secretary of State for Business, Innovation and Skills, the hon. Member for Mid Norfolk (George Freeman), who is responsible for life sciences, has committed to convene further meetings to seek a resolution of the dispute, and I hope that goes some way towards reassuring the hon. Gentleman.
The hon. Member for Congleton (Fiona Bruce) highlighted the brilliant work of the RSA—an organisation based in her constituency. She said that it had raised millions of pounds for treatments and research and that it was important that such groups have a voice and are heard. I completely accept that, and I hope to provide further reassurance in due course.
A number of concerns were raised by the hon. Member for Poplar and Limehouse (Jim Fitzpatrick)—or is he a right hon. Member? [Interruption.] I think that he deserves to be called right honourable. He referred to sickle cell disease—an important condition that was mentioned by the right hon. Member for Wolverhampton South East (Mr McFadden)—or is he an hon. Member? [Interruption.] He certainly deserves to be called right honourable, and he has clearly been rewarded. He highlighted the need to improve the care and treatment of people who suffer from sickle cell disease.
The hon. Member for Poplar and Limehouse also referred to headache disorders. My wife is one of the many people across our country who suffer from headaches and migraines, so I very much understand their impact on well-being. The hon. Gentleman asked specifically about the possibility of a meeting. Again, I would be happy to see him at one of my Monday evening sessions, but I would also be happy to make sure he and his group are put in touch with officials. I am conscious that the Department’s diary up to the end of March is chock-a-block, but I am sure he could meet officials to take the matter further, as well as meeting me on a Monday evening. I hope that is some reassurance.
My hon. Friend the Member for Colchester (Sir Bob Russell) raised the issue of prescription charges. He is right that there are anomalies—there is no point denying that—and they have existed for a long time. The previous Government looked at the issue, but they did not quite get round to doing anything in relation to long-term conditions, and this Government have also not acted. The constant problem is the pressure on resources in the NHS. People on low incomes are, of course, protected, but he made a valid and legitimate point, and the debate is, rightly, bound to continue. The other point that he made, by analogy, is that any move NHS England makes on this front must not do more damage to people with long-term conditions. I hope to reassure him that that will not happen.
My hon. Friend makes a legitimate challenge. These anomalies have not been addressed so far, but they need to be at some point. I do not seek to deny his point.
The hon. Member for Mitcham and Morden (Siobhain McDonagh) highlighted the work of Headway, which provides incredible support for people with brain injuries and their families. She mentioned the helpline and the emergency fund, which will be of enormous help to families in the incredibly difficult circumstances they face.
The hon. Member for Bristol East mentioned the Cystic Fibrosis Trust—another amazing patient organisation that does extraordinarily important work. She talked about the importance of equity of access, and it is incredibly important that that principle is maintained in any changes that take place. We do not want to return to the postcode lottery that existed in the past. Again, I am happy to try to provide responses to the questions she asked at the end of her speech.
The hon. Member for Walsall South (Valerie Vaz) was incredibly generous in her remarks about the shadow Minister, and I feel the same about him—let us be blunt about that. I appreciate her kind remarks about me—indeed, the feeling is entirely mutual. She made some really important points about epilepsy and Epilepsy Action. She highlighted concerns about many CCGs and health and wellbeing boards not yet engaging fully in work on epilepsy. That critical issue goes beyond this debate, but I completely take the point that there needs to be a lot more understanding and recognition of the importance of good epilepsy care that follows good practice and addresses the awful problem of so many people losing their lives unnecessarily to this condition.
I totally accept the point. Again, I hope to reassure the hon. Lady.
The hon. Member for Luton North (Kelvin Hopkins) referred to robotic assistive surgery. I do not want to give him any particular hope, but it is always possible for new procedures to be added to the list of those that come within specialised commissioning. The prescribed specialist services advisory group keeps the list under review. Just as there are proposals to remove procedures, there is always the possibility, if the case is made and the four conditions that need to be taken into account are met, that additional areas can be included.
I totally take that point. The hon. Gentleman is absolutely right that the NHS must be, as he put it, at the cutting edge of new technologies and new ways to reduce the invasiveness of procedures, although I add that having things in specialised commissioning is not the only way for the NHS to do so.
The hon. Gentleman was at risk of going into too much detail when he started talking about various procedures. Despite being a Health Minister, I am at risk of passing out on such occasions, so I was glad that he stopped when he did.
I have hon. Members pleading with me not to give way, but if the hon. Gentleman insists, I will. No—that comes as an enormous relief to everyone.
The hon. Member for Alyn and Deeside (Mark Tami) made some important points about blood cancers and bone marrow transplants. I was interested in his point about the need for more joined-up approaches and services, not only within health, but between health and education. At its best, the proposition being put forward has the potential to achieve that, but I am with him on the ambition for much more integration between public services.
I want now to respond to some key points made by my hon. Friend the Member for St Austell and Newquay. NHS England is responsible for commissioning 147 prescribed medical services on a national basis. Those are specialised services for rare and complex conditions. The services are set out in legislation and commissioned directly by NHS England, through 10 area teams. By commissioning those services nationally, NHS England can commission each service to a single national standard, with single national access criteria, and ensure that patients have the same access to specialised services regardless of where they live in England.
The specialised services that NHS England commissions provide for people with rare or very rare conditions. Therefore, it is necessary to commission those services across a wider population than most CCGs cover—for example, in excess of 1 million people. Specialised services tend to be provided by larger hospitals that are able to recruit and retain clinical and support staff with sufficient specialised knowledge, expertise and leadership. That maximises the provision and co-ordination of care for the relevant patients. The list of prescribed specialised services is kept under review and therefore has the flexibility to change with advances in technology and treatment—such as those that the hon. Member for Luton North referred to.
It is for Ministers to take the final decision on which services should be included on the prescribed specialised services list in legislation and therefore which services are directly commissioned by NHS England. Those decisions are not taken lightly. Expert advice is provided by the prescribed specialised services advisory group—a Department of Health-appointed expert committee established in 2013. NHS England established a specialised commissioning taskforce in April 2014, which my hon. Friend the Member for St Austell and Newquay referred to, to make some immediate improvements to the way in which it commissioned specialised services and to put commissioning arrangements on a stronger footing for the long term. Of course, as I think everyone recognises, such services must be sustainable.
The taskforce aims to improve ways of working and to ensure that the commissioning of specialised services is undertaken in the most efficient and effective way possible. Additional resource from within NHS England has been diverted to the taskforce to ensure that it has the right mix of skills and expertise to enable it to meet its objectives.
As my right hon. Friend will be aware, the taskforce has just suggested that renal dialysis and morbid obesity should come off the list of prescribed specialised services. The decision has been taken over a short period and is due for implementation before the general election, on 1 April. Will he speak to his officials and NHS England about whether further consultation is needed on the decision and whether it could be delayed?
I take the concerns seriously. My hon. Friend discussed the need for more time in his speech. I will put his representations to officials and NHS England. I cannot go further than that, but I recognise the importance of the issues that he raises and I pay tribute to the work of his constituent Nicola Hawkins in collecting many names on her petition.
Following the work of the taskforce and conversations with key stakeholders last year—from individual patients and patient groups to CCG leaders, area teams and providers of services—NHS England has identified opportunities for improvement. That will affect both what is commissioned and how the services are commissioned.
The NHS England taskforce has identified two areas where there is potential for improvement, and that must be what the process is about. First, it has identified commonly-delivered services that it may be appropriate to devolve to CCGs for local commissioning. Formal responsibility for commissioning those services would be transferred to CCGs. Secondly, in line with the vision of the five-year forward view, NHS England proposes a more collaborative approach to commissioning specialised services, whereby it jointly commissions services with CCGs. That is not a transfer to CCGs—it is joint commissioning. While some highly specialised services will continue to be commissioned entirely nationally, CCGs will be invited to have a greater say over the commissioning of the majority of specialised services.
My hon. Friend intervened on the transfer of commissioning responsibility. The PSSAG met and formulated its recommendations on 30 September. Following proposals from NHS England, it concluded that renal dialysis services and morbid obesity bariatric surgery services did not meet the four statutory requirements—debated in Parliament—for commissioning nationally as part of the prescribed specialised services list, and that therefore commissioning responsibility should be devolved to CCGs. Ministers were minded to accept its advice on changes to the list of prescribed specialised services. Given the changes involved, they felt it was important to engage with stakeholders on the practicalities of transferring the commissioning responsibilities.
The Department of Health launched a public consultation on the logistics and timing of the transfer, which ran from November to 9 January. The consultation asked respondents to consider how a transfer of commissioning responsibility from NHS England to local CCGs could take place, and what would need to happen to ensure a smooth transition while service standards and patient safety were maintained.
We are carefully considering all responses to the consultation, and will respond in due course. NHS England has assured me that it is absolutely committed to issuing guidance to ensure the safe transfer of commissioning responsibility from nationally commissioned services to locally commissioned services, where that is recommended by the PSSAG. It is anticipated that a range of products would make up that commissioning guidance, including national service specifications, national standards and contracting information.
Concerns have been raised and views expressed today and through the consultation about the transfer of renal dialysis services, which I think are the subject of the petition that my hon. Friend referred to. I assure hon. Members that NHS England is in dialogue with stakeholders about both the opportunities and the challenges of transferring responsibility for renal services. Indeed, Dr Paul Watson, the specialised services taskforce lead in NHS England, met stakeholders from renal service representative groups on 18 November to hear their concerns. My noble Friend Lord Howe, an Under-Secretary of State, also recently met all-party kidney group. I repeat that I will relay my hon. Friend’s plea for more time and of course respond to him and other hon. Members.
In addition to the proposals for formal transfer of commissioning responsibilities, NHS England is currently exploring collaborative commissioning—which is what most of this afternoon’s speeches have been about—between NHS England and CCGs, for most specialised services. NHS England has identified the fact that some services will always need to be commissioned on a national basis, including, for example, services that were under the previous arrangements commissioned as highly specialised services. However, a number of services on the current list could potentially benefit from being commissioned on a smaller footprint with greater local involvement, to make joined-up services possible across the care pathway, while maintaining national standards.
One faces a danger when separating off some procedures for national commissioning if other parts of the pathway are commissioned at a local level; that is the case with obesity services, because preventive services are commissioned locally whereas bariatric surgery is commissioned nationally. The danger is that one creates false or artificial divides in the patient pathway, which can damage patient care and create perverse incentives. We have to be cognisant of that and see whether there are better ways of doing things.
NHS England is looking to provide an opportunity for CCGs to begin collaboratively commissioning a number of services in the prescribed specialised services list from April. The approach being taken is a deliberative one that does not impose things on the tight time scale that my hon. Friend was concerned about. Collaborative commissioning would likely be carried out through joint NHS England and CCG committees. It would maintain the expertise—the specialism—but there would be the potential to spread that expertise and build capacity at a local level, which could be in the interests of everyone.
NHS England is aware of several CCGs that would welcome the opportunity to become involved in specialised commissioning, but it is equally aware that many CCGs will not be in a position to take on such increased commitments from 2015-16. There is therefore no question of a return to the previous arrangements.
I remain grateful to my right hon. Friend for giving way, and to other colleagues; this is the last time that I will intervene. I hear what my right hon. Friend is saying. It is reassuring that he is using language about improvements to patient care and the benefits that patients will feel, because there is a danger—I think it is felt by all the patient groups that we have talked about this afternoon—that collaboration becomes buck-passing. I would be reassured if he was giving the undertaking that NHS England will continue to engage with those groups that feel they have not been engaged with already and that improvement to the patient experience is the bottom line in relation to some of these changes.
I can reassure my hon. Friend on both those points. Openness, transparency and engagement with patient groups are incredibly important, and I would always argue the case for them.
Collaborative commissioning would be an open offer; it would be an opportunity to keep up momentum for high-performing CCGs that are keen to deliver more for their local communities. NHS England is looking to pilot or trial these innovative arrangements in 2015-16—nothing more than that.
NHS England has established a specialised commissioning co-design group, including members of the NHS commissioning assembly, with advice coming from clinical and patient experts, to develop further the details of the collaborative commissioning approach. NHS England will also support CCGs to ensure that the commissioning system remains stable during the transition to any new arrangements.
NHS England is now embarking on a comprehensive programme of patient and stakeholder engagement to support the implementation of these changes; I think the hon. Member for Mitcham and Morden made a plea for that engagement to happen.
It all sounds very good; localism is always thrown around as being a positive thing. My concern is that it still creates uncertainty. From the patient’s point of view, the uncertainty must be whether they will be able to access the treatment they need where they live.
That is a legitimate concern and fear, but the arrangements have the potential to avoid that risk, so that those concerns and fears are not realised; I will expand on that in a moment.
Guidance will be issued later this month setting out the detail of the proposed changes, alongside the criteria that determines which service is commissioned at which level. The engagement programme will include a number of patient and public engagement events and workshops in February, led by regional and area teams, to help to co-design the process for implementing the changes with CCGs. I encourage involvement with that programme, and as part of it NHS England will seek views on the criteria to decide which service is best commissioned at which level.
NHS England acknowledges that people are concerned about the re-emergence of a “postcode lottery”—the hon. Member for Alyn and Deeside specifically mentioned that point—as a result of a more collaborative approach. In particular, people are concerned that specialised services could once again be commissioned in a variety of ways across the country, resulting in patients experiencing difficulties in accessing services.
I totally understand why people have that anxiety, but let me be clear that NHS England would remain the accountable commissioner for any services commissioned collaboratively with CCGs. My hon. Friend the Member for St Austell and Newquay referred to the Health Committee’s concerns about the previous arrangements. However, because NHS England would remain the accountable commissioner and because commissioning would be done collaboratively, I think that concern has been sufficiently addressed.
Since April 2013, NHS England has achieved significant progress in developing a set of nationally consistent service standards and commissioning policies, which have been widely welcomed. They ensure equity of access to high quality services; the point about access was referred to by a number of hon. Members. These standards and policies will still apply for specialised services that are jointly commissioned by NHS England and CCGs, and NHS England will continue to improve on those in the years to come. I think that the shadow Minister, the hon. Member for Copeland (Mr Reed), also raised concerns about access and I hope that he finds what I have said about it reassuring.
For any services that are fully devolved to CCGs, allocations will be made on the basis of activity. Data from NHS England area teams would be used to trace historical activity levels and CCG funding allocations would be based on those, with adequate adjustments for population increase.
The purpose of the move to collaborative commissioning is to support more effective joint working and to allow discussions about service redesign to take place across the local health economy, engaging both national level and local level to try to build capacity.
In the short term, patients should not notice any difference to the service they receive, and in the medium to long term NHS England is confident that these changes should result in improvements, rather than a deterioration—including improved outcomes for patients, more integrated pathways and a better patient experience. We continue to work closely with NHS England as it develops these proposals and engages with all those involved in the commissioning of specialised services, including CCGs, individual patients and—critically—patient groups, area team commissioners and providers of services.
I thank all hon. Members and the sole right hon. Member here today, the right hon. Member for Wolverhampton South East, for contributing to this debate in a constructive way. The issues that have been discussed are of real concern, and it is right that they should have been raised. However, I think we have the potential to improve the way in which the system operates.