The All Party Parliamentary Group on Spinal Cord Injury AGM

The AGM of the All Party Parliamentary Group on Spinal Cord Injury (APPG) was held on Tuesday 26th June in the House of Lords.

The meeting’s purpose was to discuss the issues that Spinal Cord Injured (SCI) people face when being assessed for eligibility for NHS Continuing Healthcare – a vital form of care funding which is all too often denied to them. It was chaired by Ian Lucas, the Labour MP for Wrexham, and among those speaking were Professor Luke Clements of Cardiff Law School, and John Burns, a tetraplegic member of the Spinal Injuries Association (SIA).

Professor Clements, a leading authority on NHS Continuing Healthcare, gave a detailed presentation on the historic and legal basis of this type of care funding.

Key to Professor Clements’ presentation was the case of Pamela Coughlan, a C5/6 complete tetraplegic, whose care needs were determined to be the responsibility of the NHS in 1999 following a landmark judgment by the Court of Appeal. He described how the ‘Coughlan case’ was pivotal in the subsequent development of a ‘National Framework for NHS Continuing Healthcare’, but how a ‘Decision Support Tool’ now used by the NHS as part of the current eligibility assessment process was flawed and is resulting in some egregious decisions on eligibility for NHS-funded care. Professor Clements went on to demonstrate that if Ms Coughlan were to be assessed using this Decision Support Tool she would be unlikely to be found eligible for NHS Continuing Healthcare - despite the legal ruling that her care needs were of “a wholly different category” to those which could lawfully be funded by Social Services, and were therefore the responsibility of the NHS.

Unfortunately, SIA has evidence that Primary Care Trusts and Health Boards across the country are increasingly adopting excessively stringent eligibility decisions when addressing SCI people in need of such care. One of the most extreme examples is that of John Burns, a high-level tetraplegic member of the SIA, who followed Professor Clements with a courageous personal account of his distressing experience of NHS Continuing Healthcare. John acquired a C2 complete Spinal Cord Injury following a water sports accident in 2007. He was initially awarded NHS Continuing Healthcare whilst he was at the Royal National Orthopaedic Hospital at Stanmore, a specialist centre for the treatment of Spinal Cord Injuries.

In 2008 John was transferred from the Spinal Injuries Centre to a care home, but within a few weeks his Continuing Healthcare funding was withdrawn by his local Primary Care Trust, NHS Brent, without any explanation.

This withdrawal of Continuing Healthcare meant that the essential care funding needed to allow him to return to his own home was not available. John described his time in the care home as one where he felt like a ‘prisoner’, depriving him as it did over several years of his independence and important family time including special birthdays and anniversaries.

He spoke movingly about the effects that both his injury and the events that followed have had on him and his family. Whilst John recounted his experiences, it was visibly obvious that this had been an extremely difficult time for his wife who sat next to John throughout supporting him and holding his speech so that he could address the meeting.

Following intervention from the Spinal Injuries Association in 2011, an independent nurse assessor was ordered to review John’s situation. She immediately assessed that John should be in receipt of NHS Continuing Healthcare. Shortly afterwards, John was able to return to live with his family.

Following John’s return, SIA arranged a meeting with the Minister of State for Care Services, Paul Burstow MP in February 2012 to apprize him of John’s case and the wider difficulties faced by spinal cord injured people in accessing and retaining NHS Continuing Healthcare funding; the Minister accepted that John’s case was wholly unacceptable.

Despite all of this, John continues to battle with his Primary Care Trust over recent cuts to his personal care, and faces the threat of a further review of his entitlement to NHS Continuing Healthcare funding.

Like many there, the Chair of the APPG Ian Lucas MP was visibly touched by John’s presentation and expressed his concern at what he had heard and read from SIA’s briefing paper that John’s case was not an isolated example of bad practice by one rogue PCT. He asked that SIA liaise to provide additional information so that the group could take positive actions to improve the situation.

The next meeting of the APPG will take place in the Autumn, when a further update on this matter will be given.