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All Party Parliamentary Group on Spinal Cord Injury

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On Monday 8th March I attended a reception hosted by the  All Party Parliamentary Group on Spinal Cord Injury (SCI)  at the House of Commons.  The Group has been set up to deal with issues being faced by those who have suffered a SCI. The Spinal Injuries Association (SIA) used the reception to launch their “Strike a Cord” campaign which aims to ensure that all SCI people have access to specialist SCI centres.  There are only 9 centres in England and Wales and they are based in Middlesborough, Wakefield, Sheffield, Southport, Oswestry, Aylesbury, Cardiff, London and Salisbury.

We heard from Ian Lucas MP who is the Chair of the Group.  He explained how cut backs in funding for specialist SCI centres are having a dramatic and detrimental impact on the care those with spinal cord injuries need both in the immediate aftermath and longer term following SCI.  The Group are seeking to raise awareness of this massive but often overlooked area of concern in the hope that all people with a SCI have access to the specialist services offered at such units that they so desperately need.

Mr Lucas said that he was shocked that many people with a SCI have not received any rehabilitation from such a specialist centre.  There is a lack of capacity at SCI centres meaning ventilated patients are being treated in ICU rather than in SCI Centres.  This is costing the NHS hundreds of thousands of pounds because of the space they are taking up in ICU when they could be treated in specialist SCI centres which would be significantly cheaper. 

The average wait time for a bed in a SCI centre in the South of England is 32 days.  Beds in SCI centres are closing as a consequence of a lack in specialist staff.  In Stoke Mandeville Hospital 50% of the beds are currently closed. 

We learned about the shocking number of delayed discharges from SCI centres which is causing the capacity issues.  There were 2910 bed days lost to delays in one centre in 2014 which could have been a 6 month rehabilitation stay for 16 additional patients.  The main cause of the delayed discharges are difficulties in arranging suitable care packages or housing and these are certainly issues that are echoed by many of our clients when we are first instructed, often whilst they are still an inpatient at a SCI centre. Increasingly patients are facing difficulties in obtaining NHS Continuing Health Care (CHC)  funding and being able to establish that they have a “primary health care need” based upon the current criteria. Delays can also be caused by Local Authorities or CHC refusing to fund equipment which would enable patients to be discharged home.  At the MASCIP conference in November  last year we heard one case where the CHC refused to fund a Turn or Tilt system (which prevents pressure sores) which costs £1845 and so the patient remained in the SCI centre for a further 2 months at a cost of £30,000. See our blog A paralysed system? for further information.

We heard an emotional address from Claire Williams, Vice President of the SIA and  Deputy Team principal of Williams F1. She is the daughter of Frank Williams, the founder and Head of Williams F1 team who was paralysed following a road accident when Claire was just 9 years old.  She spoke of the devastation a SCI brings not only to the individual but their wider family.  Very poignantly she spoke of how she cannot remember ever having a hug from her father because he suffered his injury at such an early age and his injury resulted in his arms being paralysed.  Claire spoke of the importance of the SCI centre in providing specialist rehabilitation and support which enabled her father to return to work and ultimately build one of the biggest companies in British sport.

The SIA are urging people to contact their local MPs to bring this issue to their attention and the SIA have provided suggested wording to email your MP. I have already contacted mine!

To find out more about our spinal injury and brain injury specialist teams or any other issues arising from this blog please do not hesitate to contact me or visit our spinal injuries team page.

Brethertons is proud of its Corporate Accreditation with APIL and its association with the Spinal Injuries Association and the SIA’s Regional Peer Support Service.