A new tool has been developed to help determine the level of unmet need in community neuro-rehab around the country, which has already helped to lay bare the alarming lack of provision in the area of England it was created.
The audit tool gains insight from professionals across the multi-disciplinary team and highlights what a patient needs in all aspects of their rehab, in comparison to what they they actually receive, collecting the vital localised data to make a case to commissioners.
Led by a team at James Cook University Hospital, the tool seeks to address the major disparities in neuro-rehab nationally and show where resources must be channelled – particularly in light of the impending release of the ABI Strategy, which seeks to address such issues for brain injury survivors.
Used to collect data from 89 patients being discharged from James Cook, it revealed that, on average, 47 per cent of patients were not able to access the professional support they needed from community neuro-rehab services. Furthermore, 77 per cent were unable to access the intervention they required.
In the four months of 2022 when the data was collected, of the 43 patients who required a specialist community neuro-rehab team, 37 – or 86 per cent – were not able to secure this multi-disciplinary support.
The audit results also indicated that 161.64 bed days were lost across this period due to the lack of community neuro-rehab provision.
Consultant clinical neuropsychologist Dr Jenna Moffitt was one of four clinicians who initially met to consider how to measure unmet need for community neuro-rehab – but within a short time, the team supporting the project had grown to 44, all of whom were commit-ted to improving community neuro-rehab in the area.
While developed to highlight the scale of the problem in and around Teesside – where in some areas provision of some neuro-rehab disciplines is non-existent – the tool can be used by clinicians around the country to help make the case for better support for patients upon discharge.
“This isn’t a problem just for James Cook or South Tees, the postcode lottery of provision exists across the country, in services and community neuro-rehab provision,” says Dr Moffitt.
“We know that large numbers of people with neurological conditions are not getting the help they need to recover, and this comes at an enormous human cost to people with brain injuries and their families. There is a lot of unmet need in neuro-rehab.
“But in order to change this landscape, we need to collect the data that is informative and persuasive to NHS commissioners and service providers.”
While the statistics from James Cook do highlight a very difficult situation in provision – something that will be replicated in many other areas of the country – Dr Moffitt highlights that change is being made as a result of the audit.
“I know it is a pretty difficult picture to paint, but we can have some optimism that things are improving and changing as a result of the audit,” she says.
“The Integrated Care Board who provide the NHS funding for services were involved in the audit and helped us to analyse the data, so are fully aware of the results and are supportive of the techniques used to measure unmet need.
“Also, there are quite a few task and finish groups now that have been set up in the re-gion to look at community neuro-rehab for the first time in my career, and they are using some of this work within them.
“So it does feel like we’ve moved forward, we are a long way from where we were last year when we began.”
The levels of engagement from Dr Moffitt’s colleagues at James Cook came as a result of their levels of concern at low or non-existent levels of provision after discharge from the acute settings of the hospital or Walkergate Park, to which James Cook often refers neuro-rehab patients.
“I was overwhelmed with the amount of people who wanted to measure and joining this audit, and with people telling me their reasons why,” says Dr Moffitt.
“There were comments like ’It’s like a cliff edge when people leave hospital, there’s noth-ing to support them’. People spoke of wanting not just to give people life, but also a good quality of life.
“They pointed out that we spend six months getting to know people in the hospital and working as an MDT to help people make improvements, but then they get discharged without the support they need. It’s painful to watch and be a part of. ‘I’m often afraid for the patients and their families when the patients leave hospital,’ said one person.
“The strength of feeling is high even in this NHS post-COVID period, where we’re trying to recover the waiting lists. There was an enormous amount of willingness to take part.”
* To learn more about using the form in your area, contact Dr Moffitt on jenna.moffitt1@nhs.net
