Spinal Cord Injuries

Jim Shannon Excerpts

Wednesday 4th September 2013 Westminster Hall

[Ian Lucas]

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.

[Jim Shannon (Strangford) (DUP)]

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.

[Ian Lucas]

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.