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A paralysed system?

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The NHS is often criticised in the press for bed blocking and at MASCIP’s recent conference Continuing Healthcare: Does it? we heard about the real cost of the lack of continuing healthcare for patients with a spinal cord injury when their discharge from hospital is delayed.

Should they require care and support to live independently that care is either funded by their Local Authority (LA) or through NHS Continuing Healthcare (CHC). LA care is means tested… CHC is not. That difference often leads to a dispute between LA and Clinical Commissioning Groups (CCG) about who will fund a patient upon their discharge. That dispute invariably causes their discharge to be delayed. That blocks beds. 

We heard from Peter Hamilton from the Spinal Injury Association CHC and Social Working Group about his personal experience. Peter sustained a spinal cord injury (C5 complete) in a skydiving accident. He gave a heartfelt account of the 18 month’s of turmoil and stresses that he and his family suffered in ensuring that he received the care to which he was legally entitled. He described assessors as having a poor knowledge of the National Framework, (the guidelines for eligibility for CHC funding) lacking empathy and marginalising his needs. Peter praised the help and support he received from Brian O’Shea at the SIA who navigated him through the bureaucracy and appeals process which, eventually, resulted in him receiving CHC funding for 24 hour care.

There is a disparity between the National Framework’s 12 Areas of Care - which have to be scored - and the landmark decision in R v North East Devon HA Ex Parte Couhglan [1999]. This case established that where the primary need is a “health need” then the responsibility lies with the NHS and not the Local Authority. The difficulty is that there is no legal definition of a “health need.” 

Brian O’ Shea showed the conference a video of Pamela Coughlan (C5/6 complete tetraplegic) in which she explained her needs under the National Framework’s 12 Areas of Care. Surprisingly, Pamela would not be eligible for CHC funding under the current criteria; yet the Court of Appeal held that her needs were greater than the LA could be expected to provide. From a legal point of view it must follow that anyone whose needs are greater than Pamela Coughlan’s will be eligible for CHC but Peter’s own “war of attrition” demonstrates that there is a lack of clarity and a resultant postcode lottery for funded care to which patients are legally entitled.

Lone Rose, a researcher to the All Party Parliamentary Group on Spinal Cord Injury, discussed their SCI report which highlights the huge cost to the NHS of delayed discharges from spinal injury centres. One patient’s discharge was delayed by 54 days because the CCG refused to fund either a Turn or Tilt (TOTO) turning (a system that prevents pressure ulcers) or to fund carers to turn the patient at home at night. Two months afterwards they eventually agreed to fund the cost of the TOTO for £1,845. In the meantime the cost to the NHS for her hospital care was £30,000. But the cost isn’t purely monetary - a delayed discharge has a psychological impact not only for the patient but also their family - often staying in a specialist spinal centre many miles from home. The recommendations coming out of the report included an urgent service review to encompass better communication between spinal injury centres, SS and CCGs, eradicating the postcode lottery by ensuring consistent and lawful decisions are made.

In her presentation, Trish O’ Gorman from NHS England, admitted that the current CHC assessments and decisions on funding were unacceptable. She explained that they are working to develop a consistent approach to CHC funding, to include assessment and decision making that is lawful and timely with a focus on reducing delays in discharge from spinal injury centres. Trish assured the delegates that the concerns regarding CHC funding are now receiving deserved a high profile within NHS England.  

Let’s hope that this will result in a more transparent, fairer and speedier assessment procedure for all. It will certainly be interesting to see whether there has been any progress made when we meet again at next year’s MASCIP conference. 

For any advice please contact our spinal injuries team.