Health: Neurological Conditions

Baroness Hollins Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Hollins]

My Lords, I am grateful for briefings from the Spinal Injuries Association, and from my daughter, who has tetraplegia, and to the Motor Neurone Disease Association. I am also glad to participate in this debate, which allows for deeper thought about the needs of people with neurological conditions than is possible in the lengthy debates around the Health and Social Care Bill, and indeed the Welfare Reform Bill.

I have learned, and am still learning, about the disabling barriers that people with different impairments encounter, both as a doctor working with disabled people over the last 30 years, and also as the mother of two adult disabled children. I am convinced that policy will not be effective if the social model is not fully embraced as part of the foundational principles underlying legislation. But some needs are medical, and require highly specialist expertise. I would like to draw attention to the fact that medical research into neurological conditions is grossly underfunded.

It would also be remiss of me not to mention the importance of attending to the emotional and mental health needs of patients with neurological conditions. I am thinking here particularly of newly spinal cord-injured patients. It is not just the obvious psychological adjustment to a new impairment, and all the learning required to keep well and to reintegrate into society. We should remember that many people acquire spinal cord injuries during a failed suicide attempt and there may be an underlying mental illness which also requires active treatment. It is the partnership between medical and social agencies working with the disabled person that will best meet that person’s needs, and the needs of their family, while recognising each person’s right to respect for their private and family life, as provided by Article 8 of the European Convention on Human Rights.

In 2009, the NHS published an updated National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, for use in England with revised eligibility criteria. In paragraph 79 of the framework, explicit mention is made of the Coughlan ruling under which a person with a high-level spinal cord injury or similar health need is entitled to continuing healthcare funded by the NHS. The purpose of the continuing healthcare assessment is to establish whether an individual’s care needs are primarily health related or social in nature. This is done by measuring the totality of their care needs according to their nature, intensity, complexity and/or unpredictability, and gives rise to the concept of a primary health need. These assessments are done at the time of initial diagnosis, they are reviewed regularly and there may be a reassessment when a person’s needs have changed.

For many people, securing continuing healthcare funding is fundamental to enhancing their prospects in rehabilitation and their prompt discharge, and thereafter in the community in reducing the likelihood of complications requiring hospital readmission. However, outcomes for individuals seeking continuing healthcare are very uneven and unpredictable across the country—a classic postcode lottery.

A primary cause for concern is the lack of quality clinical input into these assessments from professional practitioners with experience of spinal cord injury and of the patient in question. Often, no opinion is even sought when assessing patients in the community. A detailed and insightful clinical assessment from a spinal cord injuries centre consultant carries significant weight, but is all too often a key missing component. In the community, in particular, the patient is frequently left to persuade sceptical assessors, and when declared ineligible, to battle the bureaucracy of the primary care trust alone.

Unfortunately, there are an increasing number of appeals by people with tetraplegia who are being found ineligible for continuing healthcare funding, although those who appeal are often later found eligible. For people with some neurological conditions the award of continuing healthcare funding will be welcomed, but for others it will not. Consider someone with spinal muscular atrophy, which is a degenerative condition. For much of that person’s life, any support needs will be considered primarily social in nature and, appropriately, funded by the local authority. Increasingly, people are receiving direct payments to employ their own personal assistants. However. when a person’s condition leads to them needing more intensive support, such as being on a ventilator or needing a personal assistant 24 hours a day, some social services departments are asking the local PCT to pick up the funding under CHC rules.

Some people, including some with spinal cord injury, do not want to move on to continuing healthcare funding when their condition deteriorates because they will no longer be allowed to employ their own staff—personal health budgets allowing this are not yet available. The Secretary of State has announced that personal health budgets will be rolled out in 2014 subject to the evaluation of the pilots, and I think that will be welcomed.

There has been quite a lot of talk also about the need for a change in the law to allow people to take their support package with them if they move area, and indeed my noble friend Lady Campbell, who sadly cannot be here for the debate today, has had the first reading of a Private Member’s Bill to introduce a right to portability of support. However, I suggest that portability is not just a matter of geographic portability but should also apply to a change in the funder from social services to health, and vice versa.

Case law—and here I mean the Coughlan criteria—clearly indicates that if you have tetraplegia, you should be eligible for continuing healthcare funding. But many PCTs have been resisting their responsibilities and refusing to honour the Coughlan criteria. Some PCTs, such as Norfolk, have apparently sought to introduce a blanket requirement that anybody receiving complex medical care and considered to be at high risk will no longer receive continuing healthcare in their own home and will have to move into nursing home care, because it is thought to be cheaper.

Rehabilitating people with spinal cord injury in the community requires a positive and active engagement with friends, family and the wider community. It requires an integrated, collaborative, and joined-up approach by the NHS and the local authority, in which recovery is understood as being as much about removing social barriers as about medical treatments. It may require, for example, disabled facilities grants to adapt living accommodation, and the installation of environmental controls. It requires financial support to pay for the extra costs of living as a disabled person.

One of the biggest worries for someone with a spinal cord injury is the risk of pressure ulcers, and the absence of ulcers is usually down to good care. It does not require health professionals to deliver this care, but it does require specially trained personal assistants working under the direction of the spinal cord-injured person. The cost of treating pressure ulcers to the NHS and to the individual is very high.

Prevention must be the priority, but that requires that people with spinal cord injury are well trained and can train specialist PAs to support them. If they go into hospital for medical treatment, it is critically important that their personal assistants continue to support them in hospital, working alongside the clinical team whose job is to attend to the reason for the clinical admission. However, some people with spinal cord injury find that their personal assistants are not allowed to accompany them to hospital and so leave hospital in a worse condition. I would like an assurance from the Minister that the Government support the continuing involvement of personal assistants in the personal care of someone with a spinal cord injury who is in an NHS hospital.

The most obvious addition to a person's daily life is a wheelchair. We have already heard something about wheelchairs. An adequate, well fitting wheelchair is of critical importance in enabling somebody with spinal cord injury, motor neurone disease or another neurological condition to participate in their local community. The current wheelchair service is too slow to respond to the needs of someone with, for example, motor neurone disease. Some people wait as long as two years after the need for a chair has been agreed. Half of those with motor neurone disease die within 14 months of diagnosis. I have heard that some people do not receive a wheelchair in their lifetime because of the unresponsive nature of the wheelchair service. I know that the Motor Neurone Disease Association would like to become a provider of wheelchair services to get round this problem. I hope that the Minister will endorse that aspiration and that it will not be disadvantaged in competition with larger commercial providers.

Another issue of real concern is the lack of palliative care provision for people with motor neurone disease. This is entirely unacceptable. If there is any condition for which excellent palliative care is required, it is motor neurone disease. In Southampton, for example, there is no palliative care provision for people with motor neurone disease. The association is calling for widespread availability. Can the Minister confirm that palliative care services for people with motor neurone disease will be included in the pilot work associated with the current review of palliative care?

For all these conditions there are concerns about how services will be commissioned in future. Will the Government issue guidance on when services should be commissioned jointly for these complex but relatively rare conditions? I am talking about commissioning both at the acute stage and in the longer term for people with complex neurological conditions. The NHS Commissioning Board and clinical commissioning groups will of course need to recognise the difference in commissioning for people with spinal cord injury—normally a fairly static long-term condition, with the prospect of somebody in their 20s living to 70—and for people with a deteriorating condition such as spinal muscular atrophy. What is not clear in discussions on the Health and Social Care Bill is where responsibility for commissioning continuing healthcare will lie in the future. The Minister's response to this question would also be welcome. Certainly, risk sharing between several clinical commissioning groups will be needed to make locally funded continuing healthcare a viable prospect.

With respect to spinal cord injury, does the Minister agree that specialist treatment in spinal injury centres leads to the best chance of recovery and rehabilitation in both the medical and social meanings of the words; that the decline in the number of people with spinal cord injury being admitted to spinal injury centres is to be deplored; that people with spinal cord injury should be treated in such centres both acutely and over their lives, as they need to be readmitted for complications from their spinal cord injury to be managed and treated; and that the National Spinal Cord Injury Strategy Board, which is to be nationally commissioned in future, should also be involved in ensuring that continuing healthcare is appropriately commissioned?