Yesterday, Ian Lucas MP, who chairs the All Party Parliamentary Group (APPG) on Spinal Cord Injury, led a Westminster Hall debate on Continuing Healthcare (CHC) and people with Spinal Cord Injury. Norman Lamb was the minister present to respond to the issues raised.
Ian Lucas raised the difficulty the APPG has had engaging with ministers over concerns relating to Spinal Cord Injury -with two ministers in particular refusing to meet with them. Aspire has faced similar difficulties and we can only hope that this debate sparks a change in the way that ministers engage with those raising issues relating to Spinal Cord Injury.
One key issue Ian Lucas highlighted was that the needs of someone with a spinal cord injury can be very complex making it crucial people have access to appropriate healthcare professionals. He said there is a concerning “culture of ineligibility” surrounding CHC with, “clinical commissioning groups interpreting the national framework differently to meet their budgets, rather than the specific needs of spinal cord injury patients”. Examples were given of how either not receiving CHC, or having it withdrawn, can have a dramatic impact on someone’s life, including forcing them to live in a nursing home. He referenced to research Aspire commissioned into the impact of living in a nursing home, concluding, as we did, that “spinal cord injury patients should not be expected to live in institutions rather than with their families”. In responding, Norman Lamb stressed the national framework says that “the individual’s wishes should be taken into account”. However, it would be even better if he was able to agree that an individual’s right to a family life and to receive CHC in their own home should not be removed due to perceived costs.
Ian Lucas asked should there “be a presumption of eligibility for tetraplegics when determining continuing health care?” Responding, Norman Lamb stated that, “It is important to say that eligibility for NHS continuing health care is dependent not on an individual’s condition or diagnosis, but on the individual’s specific care needs.” As no two people’s needs are the same, Aspire agrees that it is someone’s needs which are assessed, not simply their injury level. However, this will only work if those needs are assessed by people who understand the complexities of Spinal Cord Injury and if the individual’s own experiences and wishes are taken into account. Norman Lamb appeared to agree, saying that if someone with specialist knowledge is not being involved in the assessment process that it “is a failure to follow the national framework and should be challenged”. He added he was “interested to hear about cases in which that is not happening”; Aspire looks forward to helping him in this interest.
The minister was also pressed on the idea of monitoring whether people with spinal cord injuries are receiving the CHC they are entitled to. Such a system could address the issue of “continuing health care packages being denied or dramatically reduced after reassessments, without evidence of clinical improvement”. Norman Lamb said he would ask NHS England to provide him “with an assessment of how the work of CCGs complies with the guidelines”. We hope this could help develop a system to monitor whether CCGs are following the national framework and whether the wording of the framework is strong enough.
Spinal Cord Injury has long been overdue recognition in this sort of forum, and we are delighted that this debate took place. It was also nice to see Aspire, and our colleagues at the Spinal Injuries Association, receive recognition for the work that we do. But most importantly, it was of benefit to hear the government’s response to the issues raised; it would have been better if the Minister had been stronger and clearer in places, but nevertheless this is a useful starting point. Continuing Healthcare offers crucial support for those with spinal cord injuries and any threat to either the right to receive this support, or the choice of where this support is given, needs to be challenged. Aspire, in line with the statements from the Minister, will be ensuring this happens whenever failures in the system are brought to our attention.