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Spinal Cord Injuries

Volume 567: debated on Wednesday 4 September 2013

It is a real pleasure to serve under your chairmanship this afternoon, Dr McCrea. I am pleased to see that the Minister is here for this debate on the important topic of continuing health care for spinal cord injured people. The all-party group on spinal cord injury has had some difficulty engaging with Ministers over the past two years. The Health Minister with responsibility for quality, Lord Howe, and more recently the Minister for Housing, the hon. Member for Hertford and Stortford (Mr Prisk), have both refused to meet the group, which is very unfortunate.

The advantage of engagement is that it enables Ministers to understand better the needs and difficulties of individuals who have to deal with severe spinal cord injuries. Such individuals face great hardship and difficulty, and Ministers should at least be prepared to engage with them and hear what they have to say. I am sure that the Minister will do so today.

I first became aware of the difficulties faced by spinal cord injured people during my work as a practising personal injury solicitor before I came to the House about 12 years ago. I was particularly engaged with the Midlands Centre for Spinal Injury at the Robert Jones and Agnes Hunt orthopaedic hospital in Oswestry. Individuals were often admitted with severe spinal injuries from accidents, and the capacity of the—[Interruption.]

Sitting suspended for a Division in the House.

On resuming

I was just talking about the extraordinary work of the Midlands Centre for Spinal Injuries, which I witnessed some years ago and which continues. In connection with the immediate response to serious accidents where people have spinal cord injuries, a miraculous transformation can be carried out, provided that the right level of care is offered by specialists in the immediate aftermath of the accident.

The continuing effects of spinal cord injuries are important, and I want to concentrate on those today. Spinal cord injury results in a combination of the loss of motor, sensory and continence function, making it unique among long-term conditions. It is also a non-improving condition. Once rehabilitation is completed and health care needs have been identified, they are unlikely to decrease. Indeed, they are likely to increase over time, with complications brought on by ageing and as the condition continues. It is essential, therefore, that needs are well managed by a dedicated and trained team who understand spinal cord injuries. That will ensure that health complications and significant cost implications for the national health service are avoided or minimised.

How care is administered is a major concern to many people living with spinal cord injuries. It is not just the individual who is affected by the spinal cord injury; often, the family and the immediate community around that individual must cope with profound pressures. There is an increasing worry that health care provision is becoming a postcode lottery, with clinical commissioning groups interpreting the national framework differently to meet their budgets, rather than the specific needs of spinal cord injury patients.

The landmark legal case of Pamela Coughlan in 1999 set a precedent for how patients with a certain level of injury should expect to be treated. Ms Coughlan, a C5/C6 complete tetraplegic with no significant additional health needs, took her primary care trust to court when they attempted to transfer care provision responsibility from NHS continuing health care, within which health care is free, to the local authority, where charges may have applied.

The hon. Member for Wrexham and I spoke beforehand about this issue and I wanted the information to be recorded. Perhaps the Minister will take it on board as well.

We have a specialised 15-bed unit that looks after the whole of Northern Ireland and its population of 1.7 million people. That unit has everything: trauma, orthopaedics, neurosurgery, neurology and an intensive care unit. There are dedicated teams for physio, nursing, occupational therapy, social work, psychology, dietetics, art therapy and complementary therapies. All that happens under one roof for all the people in Northern Ireland. The hon. Member for Wrexham said to me, “That is the sort of thing we need in my area.” I wanted to put that case on the record. Perhaps the Minister could look to Northern Ireland as an example of something that has been done and done well.

I thank the hon. Gentleman.

Going back to Ms Coughlan and the issue of continuing care, the ruling found that patients with a certain level of spinal cord injury have health care needs of a “wholly different category” than can be legitimately provided for by a local authority. These are profoundly and almost singularly serious conditions. Even spinal cord injured people with greater health needs than Ms Coughlan are finding themselves assessed as ineligible or seeing their care packages severely restricted, without any evidence of reduced need.

As local health budgets for continuing health care are being squeezed and, in many cases, reduced, many of these people are experiencing reduced care packages and unfair, and potentially unlawful, decisions on eligibility for continuing health care. There are many examples of continuing health care packages being denied or dramatically reduced after reassessments, without evidence of clinical improvement.

One individual who has been affected is John Burns. He addressed the all-party parliamentary group on spinal cord injury last year, and it is occasions like that that show the importance of all-party parliamentary groups. They allow individuals such as John to speak to Members of Parliament and explain the difficulties.

John, who is married with three teenage sons, is a C2 tetraplegic following a water sports accident while on holiday with his family in 2007. Due to the extent of his injuries, John was initially put on a ventilator and awarded NHS continuing health care. After a period in a spinal cord injuries centre, John was discharged into a care home and was successfully weaned from his ventilator. Although he remained paralysed from his neck down, his continuing health care funding was consequently withdrawn, and he was told to expect to remain in a nursing home for the rest of his life. Without the appropriate funding, John was unable to receive the care and support he needed to be with his family and return home. He described that period as being like a “prisoner,” as he was denied time with his wife and sons in his own home. That is the type of individual that we, as a community, should be aiding, rather than denying them health care.

In a meeting with the Spinal Injuries Association, the then Minister of State with responsibility for care services, the right hon. Member for Sutton and Cheam (Paul Burstow), expressed concern about John’s case. Thanks to the involvement of the Spinal Injuries Association, an independent nurse was assigned to assess John’s case and immediately argued in his favour that funding should be reinstated. Yet John had to go through that process to restore the care that had been taken away from him. One can imagine the worry and distress experienced by John and his family during that period.

Despite the precedent of the Coughlan judgment, a large number of spinal cord injured individuals with health care needs demonstrably equivalent to or even greater than those of Pamela Coughlan are still denied NHS continuing health care. The culture of ineligibility continues. What action is the Minister taking to ensure that, where appropriate, spinal cord injured people have access to NHS continuing health care and that the legal ruling is adhered to? Is there a process for monitoring the level of care that individuals with severe spinal cord injuries are receiving from their immediate provider? How will the Department monitor the level of provision that is being given?

The Government must ensure that locally produced policies do not impose inappropriate and potentially unlawful care packages on a spinal cord injured person. Will the Government ensure that clinical commissioning groups adhere to the Coughlan judgment when deciding NHS continuing health care eligibility for spinal cord injured patients? Does the Minister believe that there should be a presumption of eligibility for tetraplegics when determining continuing health care? In addition to their injuries, such individuals and families should not have imposed on them the burden of worrying whether the care they received in the past will continue.

There is also concern that multidisciplinary teams assessing spinal cord injured patients for continuing health care frequently exclude health professionals with expertise in spinal cord injury when reaching their decisions. Along with the judgments that set legal precedents for NHS continuing health care, such as the Coughlan judgment, assessors and decision-making panels must carefully consider evidence from spinal cord injury clinicians and health care professionals from the NHS spinal cord injury centres. It is important that those individuals, who are so skilled in providing care, have input into the process of deciding what care the NHS is to supply in future. Will the Government take action to ensure that health professionals with expertise in spinal cord injury are included in multidisciplinary teams throughout the process?

There have been instances in which local commissioners have introduced policies that randomly restrict the amount of money available for “care at home” packages to the cost of non-complex care in a nursing home, disregarding the special care needs of spinal cord injured people and their right to family life. In an increasing number of clinical commissioning groups, local implementation policies place restrictions on the size of “care at home” packages, often based on arbitrary caps set against the equivalent cost of a placement in an establishment such as a nursing home. That has happened, for example, in the Sheffield clinical commissioning group cluster and in north-west London despite Department of Health practice guidance outlining the rights of people to choose where to live and to take risks, and despite the court’s indication that an individual’s human rights need to be balanced against cost.

The excellent spinal research charity Aspire commissioned Loughborough university to independently consider the impact on people with spinal cord injury of being discharged to nursing homes. The research found that living in a nursing home has a damaging psychological and physical impact on people with spinal cord injury. Spinal cord injury patients should not be expected to live in institutions rather than with their families. Generally, such people view care homes as a last resort.

The individual must be at the centre of the assessment process. Improving the implementation of NHS continuing health care will benefit its members, the clinical commissioning groups and the wider spinal cord injury community. Such issues affect people across the UK. They cause families and individuals profound worry, and they must be addressed urgently. The legal ruling must be adhered to, and the culture of ineligibility must end.

It is a pleasure to serve under your chairmanship for the first time, Dr McCrea.

I congratulate the hon. Member for Wrexham (Ian Lucas) on securing this debate and on his persistence in pursuing the matter. I have noted what he said about his frustration in securing meetings with a couple of Ministers. At least we have had the chance this afternoon, albeit interrupted, to debate this important issue, and I am more than happy to talk to him if there are issues arising from this debate that he wants to pursue further.

The hon. Gentleman makes the point that how care is administered is incredibly important to the individual, and he also mentioned the profound impact that spinal injury has on the whole family and everyone involved. He talks about the emergence of a postcode lottery, but if we are honest with ourselves, the postcode lottery has always existed to some extent. The interpretation of rules has always varied somewhat across the country. Indeed, the Coughlan case was brought because of a failure to apply rules properly. I will return to that in due course, but it is essential that all areas of the country apply the rules properly, according to the guidelines, and apply the precedent that has been set.

I also pay tribute to the important work of the all-party group on spinal cord injury, which has had a major impact on issues affecting the estimated 40,000 people with spinal cord injury in the United Kingdom and Ireland alone. Every eight hours, a new person is told that they will never walk again, which is a stark reminder of the scale of spinal cord injury.

Thankfully, research is making important strides in developing new techniques to help spinal cord injury patients regain as much function and independence as possible. In 2011-12, the Medical Research Council spent £900,000 on research directly related to spinal cord injury. The Government also fund a wide range of research relating to spinal injury, and through the National Institute for Health Research, the Department of Health is funding research on spinal cord injury in biomedical research centres in Cambridge and London.

There is an increasing range of guidance available to provide advice on the causes, treatment and management of spinal cord injuries. Stakeholders such as the Spinal Injuries Association and Aspire provide information and support services for patients and their families following spinal injury, and we should pay tribute to the work of those organisations. In February 2008, the Royal College of Physicians published a guideline for GPs and other health professionals involved in the management of adults with spinal cord injury in the acute hospital setting. I am confident that that range of guidance will be useful for educating people and, critically, professionals on spinal injuries and how to manage them.

More work is taking place to develop guidance for the treatment of those with spinal injuries. The Department has asked the National Institute for Health and Care Excellence to produce guidance on the assessment and imaging of patients at high risk of spinal injury. NICE is developing five pieces of guidance relating to trauma, with expected publication dates in June and October 2015. Each piece of guidance will focus on a different aspect of trauma care. The guidance on spinal injury assessment will form one part of the wider work and is expected to be published in May 2015.

The hon. Gentleman appropriately raised NHS continuing health care for individuals with spinal cord injuries. NHS continuing health care is a package of health and social care that is arranged and funded solely by the NHS for individuals outside the hospital setting who have complex, ongoing health care needs. It is important to say that eligibility for NHS continuing health care is dependent not on an individual’s condition or diagnosis—it is important to maintain this point—but on the individual’s specific care needs. That must be appropriate, so that what is assessed is what the individual needs.

The assessment for NHS continuing health care is complex and involves a multidisciplinary team co-ordinated by the relevant clinical commissioning group looking at an individual’s needs across 12 care domains and assessing how those needs interact. The process determines whether individuals have what is called a primary health need. If they do so, they will be entitled to continuing health care.

The hon. Gentleman specifically referred to concerns about specialist involvement in continuing health care assessments. The national framework, which underpins the assessment and decision making for NHS continuing health care, makes it clear that someone with specialist knowledge is involved in the process, with other highly skilled professionals, such as doctors, nurses, social care staff and therapists. If that is not happening in an area, that is a failure to follow the national framework and should be challenged. I am interested to hear about cases in which that is not happening, because corners cannot be cut—things should be done properly. He made an important point.

The family or representative may also be involved, to ensure that a holistic picture of the individual’s needs is properly identified. After all, the family probably knows best about what the impact really is.

Individuals receiving NHS continuing health care will have their case reviewed three months after the initial decision and annually thereafter. It is important to remember that the focus of the review is not only whether the individual remains eligible, but whether their needs are being properly met and the package of care remains appropriate. Let me be clear, however, that an individual must be kept fully informed about the process and any proposed change to the care arrangement.

The hon. Gentleman expressed concerns about refusals of NHS continuing health care or the package being drawn too narrowly, suggesting that the Coughlan judgment was not being followed and that cases more serious than the Coughlan one were being refused—I think I have put that correctly, from what he said. I again make the point that if any areas are failing to follow the national framework, that must be challenged. I appreciate that families may not always understand or know how to go about challenging, or what they are entitled to, but we all have responsibility to disseminate that message and to encourage people to challenge decisions that cannot be justified.

The Minister is being very constructive in his response. Is there any process for monitoring the decisions? Organisations such as the Spinal Injuries Association can bring individual cases forward, but there needs to be some sort of system to ensure that the rules, which I am grateful that the Minister is stressing today, are being enforced as a matter of course.

The hon. Gentleman makes a fair point. I was about to say that I will ask NHS England to provide me with an assessment of how the work of CCGs complies with the guidelines. The very fact of that request for information will help focus minds and ensure that things are being done properly.

I am aware that there are some concerns about how autonomic dysreflexia is reflected in NHS continuing health care assessments. It is unique to spinal cord injuries and should always be treated as a medical emergency. The needs of individuals experiencing autonomic dysreflexia are to manage both the risk of episodes occurring and the risks involved if and when such episodes occur. Such risks, and therefore the needs, vary from one individual to another. It would be relevant to establish whether the individual has signs and symptoms of an advancing episode or whether the episodes are random and unpredictable.

It has been suggested that more people with spinal injuries are being placed in nursing home settings, rather than being offered a care package in their own home. The national framework is clear that NHS continuing health care packages should be as far as possible personalised—designed to meet that individual’s needs—and that the individual’s wishes should be taken into account. It is our hope that personal health budgets—a concept developed under the previous Labour Government, but strongly pursued under this Government—will give people more personal control over their care.

We recognise that it is more efficient for people with long-term conditions such as spinal cord injuries to have control over their own budget for health and social care, because they are less likely to duplicate services or to choose ones that are not right for them. Beyond being efficient, however, it is simply what we should be doing: we should be putting the individuals in charge and allowing them to determine their priorities. On that basis, CCGs are already able to offer personal health budgets to people on a voluntary basis, if they consider that it is cost-effective and will improve the individual’s quality of life.

We have also brought in legislation that will allow CCGs to offer direct cash payments as a way of managing personal health budgets. However, to make personal health budgets more of a reality for people, we have put measures in place to ensure that CCGs go further than offering them only on a voluntary basis. As of April 2014, those receiving NHS continuing health care will have the right to ask for a personal health budget, including a direct payment. Using a personalised care planning process, personal health budgets help people choose how to meet their health needs in ways that work for them.

I have just set out how the process for NHS continuing health care is intended to work. Let us not pretend, however, that it works perfectly in every case—it clearly does not. I am delighted that the Spinal Injuries Association continues to have a strong presence on the NHS national continuing health care stakeholder group. It is important that its voice and that of the people it represents are heard.

Eligibility for NHS continuing health care depends on a needs-based assessment. Therefore, some individuals will not be eligible, but they must still receive the appropriate level of care and support. Disjointed care is a source of complete frustration for patients and staff alike. To stay relevant to changing needs, different parts of the NHS and other organisations such as social services have to work more effectively together to drive joined-up care.

The first NHS mandate sets out a requirement to provide

“care which feels more joined-up to the users of services”,

and which

“ensures people experience smooth transitions between care settings and organisations”.

That is vital, and there is a total focus in Government on integrating and joining up care around the needs of the individual patient. On that basis, we have asked NHS England to make huge efforts to focus on delivering integrated care and support to improve outcomes for patients and for people who use those services.

I thank the hon. Gentleman for securing the debate. The issues that we have discussed this afternoon are important, because of their impact on people who have sustained a spinal injury which in itself is completely life changing. We must ensure that the care and support systems work to meet their needs and to enable the best possible quality of life and outcomes for those individuals.

Question put and agreed to.

Sitting adjourned.