Question for Short Debate
My Lords, I declare my interests as recorded in the register.
Multi-agency working is not new and some agencies have worked together well over the years, but in the field of health and social care there are some serious problems. Apart from the universal ones of lack of funding and high staff turnover, most importantly, there is no governance framework. This concept is familiar to the Department of Health and to social services for research projects but for some reason there is no framework for multi-agency working. This means that, after major changes in working practices over the past five to 10 years, there is a severe lack of leadership, accountability and conformity in the provision of health and social care for some of the most vulnerable members of our community.
In its introduction to multi-agency working, the Social Care Institute for Excellence states:
“Working in collaboration is essential if individuals are to be offered the range of support they require in a timely manner. Multi-agency working is about providing a seamless response to individuals with multiple and complex needs”.
I will show that this is not so. Professor Steve Field, Chief Inspector of Primary Medical Services and Integrated Care, said in the introduction to the Care Quality Commission’s June 2014 report on the transition of young people from childhood to adulthood, From the Pond into the Sea:
“This report describes a health and social care system that is not working, that is letting down many desperately ill youngsters at critical times in their lives. We have put the interests of a system that is no longer fit for purpose above the interests of the people it is supposed to serve”.
In my contacts with people suffering from myalgic encephalomyelitis—also known as chronic fatigue syndrome or CFS/ME—particularly those who are very severely affected, I encounter some of the worst practice, although I recognise that there are other rare and misunderstood diseases that cause similar problems for the authorities. Part of the problem is the perception held by many in the medical profession that ME is a psychosocial behavioural problem and that the people concerned do not deserve the benevolence of health and social care providers. This is despite an increasingly large body of evidence that demonstrates that this is a very real illness, albeit with psychological symptoms common to many chronic illnesses.
One case that I have been dealing with since the summer is of a young lady who is in the transition process. Prior to reaching the age of 18, she had the very unpleasant experience of being locked away in a unit for anorexics for 16 months when she did not have an eating problem. Her parents, threatened with child protection proceedings, agreed simply because they were terrified of losing their daughter altogether. Little did they realise how ill their child would be when, after the intervention of a very good social worker and myself, she was allowed home. She is now bedridden and has to be tube fed. Health and social care was provided within the purview of social services, which took the lead. The current problems started with negotiations between the CCG and social services for her transition from children’s to adult services in March 2013. She turned 18 in November 2013. Because of the mismanagement of her case by the neighbouring CCG, which had been appointed to conduct her assessment for adult health provision, and the inability of social services to call anyone to account, no decision has yet been made.
It seems that those concerned have not read the National Framework for Continuing Healthcare and NHS-funded Nursing Care, which requires assessments to be completed within 28 days. Her parents have had dealings with at least nine different agencies, excluding her GP, nutritionist and hospital. The health authorities are disputing her need for funded nursing care. Instead of resolving differences together, social services believe that healthcare is necessary and must now appeal to a committee. This is only a very small part of a very complex story. The acute stress that this is causing to the family is not conducive to the patient’s recovery.
In another case, a 16 year-old is also bedridden and being tube fed after being forced to perform graded exercises in a hospital because a paediatrician diagnosed idiopathic chronic pain, and later produced a string of alternative psychological diagnoses. Her parents had, again, co-operated with the authorities in the face of Section 47 proceedings under the Children Act, but they also asked for a second opinion as they were convinced that their daughter had ME. This was refused by the paediatrician. Subsequently the parents obtained two opinions from recognised CFS/ME specialists, both of whom found their daughter to have the illness in its severest form. In fact, she has been found to be only 3% functional. The community paediatrician refused to engage with them and called a strategy meeting without the parents knowing. Senior hospital paediatricians then became involved in the case. The parents have also had to cope with five different social workers in 10 months. To cut another long story short, the hospital finally agreed to withdraw, provided that certain physical tests were conducted on the child. These were done by one of the CFS/ME specialists, himself a paediatrician, who had given a second opinion, and the child’s GP. Her social worker was also present and agreed that the child was well cared for and that there were no child protection issues. The specialist and the GP agreed that they could manage the case until a suitable and acceptable adult hospital physician could be found.
What concerns me about this case is that the hospital medical professionals involved have been determined to hound the parents of this very sick young girl in their determination to prove a point—that the child has a psychological condition. They have distorted evidence at joint strategy meetings, to which the parents were not invited and could not defend themselves. In fact, I have been described as writing intimidating letters to them when I have been trying to help. They are still pulling strings in the background, despite their agreement to withdraw, by demanding to be present at meetings when the parents and the patient have made it perfectly clear that their trust in the doctors has irretrievably broken down and that the doctors are not welcome. They seem determined to pursue a vendetta against this family because they have had the audacity to disagree with the doctors’ diagnosis of the child’s condition. Yet they are answerable to no one unless patients complain to the GMC—a very protracted process.
These problems do not affect only children. A young woman who has had ME with other complications for five years became severely affected and required health and social care. She was then given a psychological diagnosis by a psychiatrist and, on the basis of this, her GP ordered social services to gradually withdraw her care provision over a period of six weeks so that she would be forced to care for herself. Her food was left out of her reach, yet she could not hold a bowl. She has not had her hair washed for eight months. When care was finally withdrawn, kind friends and neighbours went in to cook for her and to feed her. Fortunately, they have managed to help her change her GP and some of her social care requirements are now being met—but no one is answerable for her previous treatment.
I have spoken of instances with which I am familiar. A charity, the Young ME Sufferers Trust, has dealt with more than 140 cases of children with ME where child protection proceedings were instigated at the behest of doctors or teachers because the children were not recovering or attending school. None of these cases was found to be proven, but no one could be held accountable for the untold pain and anxiety suffered by the families. Many are still very frightened that their case might be reopened and are afraid to speak out publicly. This is a terrible situation and it is kept under covers because the parents are so afraid.
I am sure that those who designed the health and social care legislation did not mean it to be like this, and I ask the noble Baroness the Minister to do all in her power to improve the situation. There really is a crying need for leadership, accountability, integrity and competence in this field.
My Lords, I very much welcome the noble Countess securing this debate and what she has to say. She has used examples of a number of young people with CFS/ME and has illustrated some of the issues that arise where it appears that no one person or agency ultimately takes responsibility for the way that they are treated and supported. It would be helpful if the Minister were prepared to have a look at some of the detail of the issues raised by the noble Countess. I understand that Ministers cannot intervene in such cases, but there may be a pattern here which it might be valuable for her department to be prepared to look at.
The question of accountability applies to many aspects of health and social care. Recently, I was reading the National Audit Office report on the better care fund, the fund that has been created, partly from NHS money, to invest in community care in order to reduce some of the pressures on our health service. The Minister will be aware that the original fund ran into trouble and that there was a redesign of the scheme in April this year. Interestingly, the National Audit Office has some concerns about how what should be an integrated approach will actually work. I was also interested to read another report, from the King’s Fund, which was cited in a briefing that I received from the Royal College of Nursing. The King’s Fund looked at common challenges to integrated care. It talked about lack of funding, lack of GP engagement, the inability of wider health systems to innovate effectively, the lack of integrated IT systems and problems caring for people in remote and rural locations.
It is patently obvious that unless you have some agency, or a multi-agency approach, in which someone is held accountable for the way the whole thing works, we are unlikely to see major improvements. My experience in Birmingham, when I chaired the Heart of England NHS Foundation Trust, was of the kind of pressures that you get in the health service: problems with out-of-hours and primary care, and big cutbacks in social care. Demographics mean that more frail and older people go into hospital, and then it is hard to discharge them. There can be any number of meetings, and you can have regulators coming down to beat the acute trust up, but nobody seems to be able to hold the system to account. It is so obvious that these are problems of a collective system.
That is why I think that the noble Countess is absolutely right to ask this Question. My party’s proposal for whole person care is designed to try to deal with those issues by bringing health and social care together under the auspices of the health and well-being board, with an integrated budget and a single point of contact for people with multiple needs. These seem to me to be the essential ingredients. Also, we have to get back to a situation where someone takes responsibility for the way that a local health and care system actually works.
I do not want to reopen our debates on the Health and Social Care Bill in 2012, but it is patently clear that the Government have produced a set of arrangements in which nobody is accountable for anything. That is the huge problem that we face. If we try to raise issues with Ministers on a particular condition—I have three cases running in relation to different medical conditions—essentially, they will say that it is a matter for NHS England. You then go to NHS England, where you find that there is no one responsible for single service areas, because they have the mantra either that it is specialised commissioning or that it is down to clinical commissioning groups.
That is replicated elsewhere. For instance, I ask the Minister: who is responsible for the effectiveness of the Birmingham health system? Nobody is, because it is split between different clinical commissioning groups and a variety of NHS trusts. The local office of NHS England clearly does not have the capacity to exercise leadership, nor do people at the centre think that it should.
One way or another, we have a big problem around the need for integrated services, whether it is services for the community as a whole or services for individuals, in the cases that the noble Countess has cited. At the moment, it seems very difficult to produce a set of arrangements where, in the end, you can finger somebody and actually say, “You are responsible for making this thing work together”. The noble Countess has done us a great service in raising a fundamental issue about the current arrangements. We all look forward to the Minister’s response.
My Lords, I thank the noble Countess for securing this debate. She has raised some important issues. I would particularly like to thank her for providing information to me and my officials in advance of today’s debate. She will understand that I am not able to comment directly on specific cases, save to say how much I sympathise with those afflicted with this terrible condition, and indeed their families supporting them. She is right to emphasise the need for integrated approaches to meet the needs of people with ME or chronic fatigue syndrome. This is a condition that presents in a variety of systems, but the point that she raised is that it remains incompletely and inconsistently understood. Partnership working between different professionals is key to getting a consensual approach to treatment.
I am not able to determine from her speech whether she was talking about one particular geography, or a whole different load of geographies, so what is the common factor? Maybe ME is the common factor of that geography. But certainly, a lot of work has been done very recently to put in place a framework for achieving multi-agency working. There is consensus about the need to better integrate health and care and, in the case of children, education services, too. You need the three services working together. Under the Care Act, the much maligned Health and Social Care Act, and the Children and Families Act, we have made progress in ensuring that the right statutory enablers are there, while allowing local areas the freedom to develop their own accountability mechanisms depending on their local circumstances.
NHS England and clinical commissioning groups are under statutory duties to promote integration. They are required to act with a view to secure that health services are provided in an integrated way, and to secure the provision of health services integrated with the provision of health-related services, or social care services, where this would improve the quality of the services. The better care fund and integration pioneers provide a mechanism for driving the good practice of integration of health and social care for adults. Areas have pooled £5.3 billion of health and social care funding through the better care fund, with each area needing to set out a robust plan to access their share of the fund. Noble Lords are clearly aware that the Government asked areas to revise plans following an initial submission in April. They were asked to resubmit to ensure that their visions for integration, no matter how impressive, were supported by robust governance and accountability that was required to ensure the successful delivery of these joint plans. This included more evidence of how areas would move towards having a single accountable professional for people with the most complex needs, so they do not repeatedly have to tell their story; they know who to turn to when they have questions or concerns about their care. I should highlight that from 1 April 2015, all GP practices will have a named GP for every patient, including the children, taking responsibility for co-ordination for their care, which should help strengthen the links between primary and secondary care, particularly for those with a long-term condition.
For children and young people with special educational needs or disability, we have introduced a statutory framework for integration across health, social care and education. Children in this group usually have complex needs and, too often, families face a battle to get the care they need, having to repeat the same story to different services and professionals. The new framework will change that. The statutory requirements are designed to improve integrated working across health, education and social care, to deliver improved outcomes for children and their carers. Clinical commissioning groups and local authorities will work together to develop for each child an individual education, health and care plan, focused on the outcomes that will make a real difference to the child or their family. It is a statutory framework; its key points set out in the Children and Families Act 2014 and its accompanying code of practice. It requires clinical commissioning groups and local authorities to have formal arrangements in place for working together to secure joint needs assessments and the subsequent care required by the plan, as well as agreeing personal budgets for the child or young person.
Involvement of children, young people or adults in care planning, as well as their families and carers, is essential, and not just for children with special educational needs. It should be fundamental to securing an understanding between professionals and patients. For children, the EHC plan should capture the services that the child is receiving and the specific outcomes that those services will deliver. The plans must be truly person-centred by describing what success looks like in terms of the child’s experience and abilities, and each plan will have a section that allows the child and their family to talk about themselves, their wishes and aspirations. This new approach has been extensively piloted by local authority pathfinders, which have found it a tremendously invigorating way of bringing commissioners together and thinking about provision in integrated ways. I am confident that this new approach will be a powerful exemplar for other services, not just for children, on effective integration.
We should also acknowledge the related issue of getting transition right. We have heard about this through discussions of mental health and disability, when suddenly at 18 one becomes an adult. Moving from children’s to adult services, for both physical and mental health services, is too often a challenge. It is important for services to work together around the needs of young people as well as their families and carers. This is something that necessarily requires the service as a whole to be mobilised to change.
The noble Countess highlighted the CQC’s report, From the Pond into the Sea, which showed how much more we need to do to secure effective transitions. Our system-wide pledge, signed last year by the major health organisations, includes the ambition to secure care co-ordinated around the individual young person with complex needs, to deliver a positive transition to adult services. The partners to this pledge are working to deliver it, not least NHS England, which has a specific mandate commitment to support smooth transitions between children’s and adult services. NICE is developing for publication in 2016 a guideline on transition from children’s to adult services for young people using health or social care services for use in England. This promises to have a big impact on stimulating cultural change.
Our mandate to Health Education England requires it to work with key partners, including the Royal College of General Practitioners and the Royal College of Paediatrics and Child Health to develop a training course to allow GPs to develop a specialist interest in the care of young people with long-term conditions, for introduction by September 2015, which will include particular emphasis on supporting transition from childhood.
Of course, there are cases in which integrated approaches may not work as smoothly as intended, but such disappointments will be fewer in number as we develop the necessary culture and partnership, working across health, social care and other services. I hope that I have provided some reassurance to the noble Countess that we have in place the right national legislative and policy framework.
I would just like to pick up on some points. Both the noble Countess and the noble Lord, Lord Hunt, talked about the funding for the NHS and the social care issue. The care that a person needs must not be held up by disputes over who pays or the distribution between nursing care and social care. The statutory guidance for the Care Act makes that absolutely clear. In the case cited, if discussions had begun earlier, before the young girl’s need for transition, this would have allowed significant differences of opinion to have been resolved.
I can tell the noble Lord, Lord Hunt, that it is not the case that there is a lack of accountability just because we have local commissioners. CCGs remain responsible for the healthcare they commission; local authorities are responsible for social care. In social health and well-being boards, we have a means of unifying local accountability. Health and well-being boards have local members and Healthwatch members. The parents of the children the noble Baroness has been dealing with may be making complaints, and we know from the Francis and Clwyd reports that there is more to do in improving complaints handling for health and social care. However, there is still a duty on all NHS bodies to handle complaints, and obviously the health ombudsman, to whom one can have recourse subsequently, can link up with the Local Government Ombudsman where issues covering health and social care demand it.
This has been a really interesting debate. I am quite happy to have a conversation with the noble Countess afterwards about some of the individual cases, but it is not appropriate to raise them in this context. I hope that she is confident that robust governance and accountability mechanisms are coming down the track and will be in place. They were incorporated in legislation—the Care Act and the Children and Families Act—and we should allow these mechanisms to happen locally.
Committee adjourned at 6.51 pm.