Bridging the gaps in progressive neurological services

Neurology accounts for significant – and increasing – NHS activity and spending. There are an estimated 2.2 million people living with progressive neurological conditions in England. To put that in perspective, UK-wide there are 2.5 million living with and after cancer. 

To date, however, neurology has not been prioritised on a national level. In fact the NHS long-term plan doesn’t even mention neurology.

Being almost entirely unrepresented in accountability frameworks, it’s unsurprising the neurology patient experience is comparatively worse than other disease areas, with patients reporting poorer experiences of care, and lower confidence and trust in services.

Toolkit

Thankfully there is a huge and immediate opportunity for local commissioners who wish to improve care while making services more cost-effective. A new NHS England toolkit, developed with patient groups including the MS Society, provides a roadmap to help clinical commissioning groups address underlying issues.

The NHS estimates that, if implemented successfully, people with neurological conditions will receive better care, closer to home. There could be 2,500 fewer emergency admissions to hospitals for patients with MS, Parkinson’s and MND alone, enabling the NHS to re-invest £10m in patients (if CCGs achieved the rate of their best five peers using NHSE and NHS Improvement RightCare methodology). 

To date, however, neurology has not been prioritised on a national level. In fact the NHS long-term plan doesn’t even mention neurology

Created with Parkinson’s UK, MS Society, MS Trust, MND Association, Sue Ryder, Multiple System Atrophy Trust and Progressive Supranuclear Palsy Association, the toolkit is unique in bringing together diverse neurological conditions and distilling the joint opportunities for improvement.

The toolkit also offers solutions to tackle challenges like delays in diagnosis and treatment, limited availability of neurospecialist rehabilitation, re-ablement and psycho-social support, and workforce pressures. 

Our shared priorities for improved care include quicker referrals, established, timely processes for symptom management, and emotional support services.

The means of overcoming them are very much aligned with the direction of the NHS long-term plan – namely to create more joined up, co-ordinated care, in a health service with prevention at its heart, that makes the best use of technology and data to achieve this. 

Solutions

Crucially, the solutions are deliverable within the funding envelope available. The £20bn investment in the NHS is wonderful, but does not mean we can continue delivering all of the same services in the same way to more people.

For instance, there are not enough MS specialist clinicians in England to meet growing demand. They take years to train, so we need to use existing specialist capacity smartly.

 The toolkit is unique in bringing together diverse neurological conditions and distilling the joint opportunities for improvement

Too much specialist nurse time is taken up with administrative rather than clinical work. Services could provide better care, at relatively little cost, by ensuring sufficient support staff for specialist teams. 

A great example is the MS team at St. George’s Hospital Trust in London. They recognised the strain blood monitoring was having on nurse’s time, with patients often waiting hours for a simple blood test.

By introducing a phlebotomist and more flexible appointments, patients now have to wait a maximum of 15 minutes for blood tests, and nurses can spend more time supporting patients. 

Benefits

MS specialist Nurse at St. George’s, Sarah White, has noticed the difference: “The MS team have confidence that patient treatment is being monitored safely, while nurses have capacity in their clinics to review all patients with MS – not just those on treatment that require a blood test.”

Patients are seeing benefits too. Claire Plackett, 54, is treated at St George’s. “I have blood tests once every three months to check my medicine is working, but in the past always had to join the general queue. It would take hours and was physically very draining, but now two days a week there’s an MS phlebotomist there taking blood just for MS patients. The service is incredibly important to me because it makes life so much easier.”

There are not enough MS specialist clinicians in England to meet growing demand. They take years to train, so we need to use existing specialist capacity smartly

Similarly, an award-winning Parkinson’s outpatient service that provides unified multidisciplinary support for people with complex Parkinson’s, in particular addressing a UK-wide lack of mental health support for the condition, has been shown to reduce the average time from referral to review to 10 days.

This is compared to a previous 120-day response time for a multidisciplinary team assessment with mental health involvement.

As well as improved outcomes for patients, the service offers estimated savings of around £1,000,000 to commissioners, including reducing Parkinson’s emergency admissions by 7 per cent, and a 38 per cent reduction in length of stay. 

Technology

The new toolkit highlights technology’s key role in improving care for progressive neurological conditions. As an MS Society report last year stressed, technology can and must be used so patients and healthcare professionals can access vital information in a timely manner.

In Southampton, online integrated care planning has been trialled with over 200 neurology patients. Care plans were added to the hospital’s digital self-management platform, meaning they could be shared across teams and have outcomes tracked, which was not until then possible.

An initial evaluation found it improved care and is a much more efficient way of operating.  

This toolkit makes it significantly easier for CCGs to understand and prioritise the needs of people living with progressive neurological conditions. We urge all CCGs to grasp the opportunity to reflect on how their services could improve. 

As Ms Plackett says, “MS services in the UK are so inconsistent. I was really lucky to get the care I did because who knows how I might have ended up otherwise.” 

But it shouldn’t be a case of luck. There is so much to gain by tackling the variation in neurology outcomes and spend across the country.

Charities representing those with progressive conditions, including the MS Society, will continue to work with commissioners so together we can improve services. With patient voices at the heart of that conversation, and with this roadmap to guide us, we believe we can make some incredible changes.

This is truly an unmissable opportunity to improve neurological services in England.