Policy decisions are denying people with neurological conditions the accessible, holistic, personalised care they need and deserve, a new report has found.

Neuro Patience: The National Neurology Patient Experience Survey 2018/19 was published by the Neurological Alliance last month (July 2020).

Sarah Vibert, Chief Executive of the group, that represents the UK’s main neurology organisations including the MS Trust, the MS Society and the MS National Therapy Centres, said:  “People with neurological conditions are quite literally waiting, often with worrying, painful neurological symptoms that are preventing them from living their day-to-day life.

“They are waiting for a referral to a specialist, waiting for an appointment with a neurologist, waiting for new treatments to be developed and waiting to get the financial and social care support they need.”

The report calls upon the healthcare system to recognise that neurology as a whole should be a focus for improvement efforts in the NHS.

The Long-Term plan, for example, singles out a number of more common, neurological conditions, such as stroke, dementia and cerebral palsy, while others are entirely absent.

Accessibility

The report, based on the views of more than 10,000 people with neurological conditions, found that 39 per cent saw their GP at least five times before being referred to a neurologist.

Of those who needed to see a neurologist, 29 per cent waited more than a year for an appointment. More than a third, 38 per cent, did not have access to a specialist nurse but wanted to.

Neuro Patience highlighted the importance of access to specialist support with the story of Jenna, a 32-year-old teacher from Leicester who was diagnosed when she was at university.

She told the survey: “When I met my MS nurse everything started to make sense. I could ask the questions I wanted to: What is MS? How is it going to affect me and my life? I left my first appointment thinking, ‘I can do this. Yes, I’ve got this condition, but I can deal with it’.

“I am so grateful, and I have always felt so blessed that I have a nurse who is constantly there to support me in every way. It’s worrying for me to know some areas don’t have that support.”

The alliance recommends a national numerology plan for England be urgently developed to address delays and regional variation in access to services.

Sustainability and Transformation Partnerships or Integrated Care Systems should include neurology as a priority area for improvement in their plans, it added.

Holistic care

The report also acknowledges the importance of holistic care delivered by an integrated health and social care system.

Forty per cent of survey respondents said their mental health needs were not being met at all. The figures were 43 per cent and 38 per cent in relation to financial and social care needs.

Professor Adrian Williams, Co-Chair of the National Neuro Advisory Group, said: “At the level of an individual patient, this means GPs, neurologists, allied health professionals, mental health professionals, nurses, social workers and others working together to support an individual to optimise healthcare outcomes and maximise independence.

“At system level, this means primary, secondary and specialised care working in partnership to provide a seamless pathway for patients. Integration also requires different commissioning bodies, care settings and NHS organisations to work collaboratively.”

The report recommendations state that people with neurological conditions should be “afforded the opportunity to live dignified, fulfilled lives, maximising their wellbeing”.

“Neurology should be prioritised for mental health improvement initiatives aimed at people with long term conditions, such as the commitments made in the Long-Term Plan for the NHS,” it went on.

Personalised care

Another area the report looks at is the personalisation of care. Almost half, 43 per cent, of survey respondents said there were not given written information at diagnosis, and 30 per cent said they did not feel involved in making choices about their healthcare.

Just 10 per cent said they had been offered a personalised care plan.

“Person-centred care should be provided to all people with neurological conditions through delivering the commitment to personalised care contained in the Long-Term Plan for the NHS, especially in relation to information provision at the time of diagnosis and care planning,” said the report.

Pan-neurological improvement

In 2016, a Public Accounts Committee inquiry into neurological services found that diagnosis took too long, hospitals services were variable, and local health and social care services were poorly coordinated.

There has been a marked change in momentum since these findings, but there is still much work to be done to bring outcomes and costs in line with those in other long-term conditions.

Since 2001, there has been a 39 per cent increase in deaths related to neurological conditions, compared to a six per cent decrease in all-cause mortality.

And according to the 2018 GP survey, 19 per cent of patients with a neurological condition had experienced an unplanned hospital stay in the previous year. That was twice the rate for all people with a long-term condition, which stood at 9.8 per cent.

“The Neurological Alliance is waiting, somewhat impatiently, for people with neurological conditions to be prioritised by the health system, recognised by the benefits regime and given access to appropriate social care.

“This report sets out what we want to happen to ensure that people with neurological conditions do not have to wait much longer for care and support that is accessible, personalised and holistic,” said Ms Vibert.

To read the full report, click here.