It’s time to get it right for people with neurological conditions in England
People with neurological conditions in England are being let down by the very health and care systems that are supposed to be supporting them – that’s the finding of Sue Ryder’s new report Time to get it right. Despite the best intentions of the professionals working within them, health and social care systems aren’t set up to consistently deliver what people with neurological conditions in England need and deserve.
People with neurological conditions are often ‘invisible’ to these systems.
A clear majority of local authorities do not routinely record whether someone they provide services for has a neurological condition, and only a quarter of the bodies that commission health services were able to provide any data at all on the number of individuals with a neurological condition in their area.
Our report finds that services for people with neurological conditions are patchy and inconsistent, with some parts of the country doing much better than others. It also highlighted some really worrying practices.
Our research leads us to believe that there are more than 15,000 people with neurological conditions who have been placed in generalist older people’s nursing or care homes across England – places that are not able to provide the specialist support people need for neurological conditions, and that will, in many cases, be socially inappropriate.
We also found more than 500 people with neurological conditions being placed in residential placements far away from home, isolating them from friends and family.
So what can we do about it?
We can make things better. Wales have had a national plan to improve services for people with neurological conditions for several years, and in Scotland they have been working on a plan of their own. We need to do the same in England.
People having the support they need shouldn’t be too much to ask.
It’s time to see a concerted push to really deliver what people with neurological conditions deserve.
It’s time to get it right.
Duncan Lugton is Policy and Public Affairs Manager (England) at Sue Ryder. He is Chair of The Neurological Alliance’s Policy Group.
Download Sue Ryder’s report
This post was originally published on the Sue Ryder blog.
The neurology data catch-22
The word ‘neurology’ is not mentioned in the long term plan. Yet our latest estimates suggest there are 14.7 million neurological cases; equating to at least one in six people living with one or more neurological condition(s). And we know that because of an ageing population, improvements in diagnosis and advances in neo-natal care, neurological prevalence is rising and set to continue to rise.
We also know from our charity members, who support people with neurological conditions day-in day-out, that the NHS is failing this group of patients. People with epilepsy who do not receive support to self-manage their condition and are frequent attenders at A&E. People who have MS go into hospital with UTIs that could have been prevented with better community care. People with rarer conditions visit their GP ten times with the same symptoms before getting a referral to a neurologist.
So why is neurology not a priority for the NHS?
During the development of the NHS Long Term Plan there was a very clear message from NHS England that if the benefits of a proposal could not be evidenced, it would not be included. And this is where the neurology catch-22 comes in. The neurological community lacks hard data to demonstrate neurology is problem, but without a neurological priority, improvements in data are unlikely to be forthcoming.
While data has improved in recent years, there are still gaps in our knowledge. For example, most of the care for people with neurological conditions takes place in outpatient neurology clinics or in the community. Yet with existing datasets it is not possible to know what condition an individual attending a neurology appointment has, nor whether the appointment was relating to diagnosis or ongoing management of a condition. There is also no nationally collected dataset about patient outcomes with which to assess the effectiveness of care. Another huge gap is the lack of data about social care for people with neurological conditions. For rare neurological disease – which we estimate make up at least 150,000 neurological cases – there is little or no data at all.
Without this information, it is very difficult to tell if the money spent by the NHS on people with neurological conditions represents good value – in terms of patient outcomes and in terms of effective use of a cash-strapped NHS’s funds. (And while we are on the subject of money; the only publicly available data on neurological spend is now seven years old. We have spent the last two years trying to get more up to date spend data but to no avail).
This Brain Awareness week we publish a new report – Neuro Numbers 2019 – bringing together all the latest pan-neurological data that is available for England. In it we highlight that the number of neurological cases has now reached 14.7 million. Given the rising prevalence, surely it is time neurology was prioritised for improvement in terms of data collection, so the system can make evidence based decisions about care?
Sarah Vibert is chief executive of The Neurological Alliance and a member of the Neurology Intelligence Collaborative.
Will the long term plan deliver for people with neurological conditions?
Getting the long term plan right for people with neurological conditions was the subject of our August 2018 report, where we set out how NHS England could address the needs of the growing number of people living with a neurological condition. When the plan was published earlier this month, we are ready to be sceptical, ready to be disappointed, but on the face of it we were initially pleasantly surprised by the number of areas we had highlighted as our priorities that had been included. Measures to prevent emergency admissions and crisis – tick. A real focus on personalised and integrated care – tick. Better access to specialists – tick. Prioritising mental health needs of people with physical health conditions – tick.
The long term plan even mentioned a number of neurological conditions by name – dementia and stroke were to be expected, but new commitments relating to epilepsy, autism, learning disability and neurodevelopmental disorders were particular welcome. Specific commitments on end of life care, a focus on falls and frailty and measures to reduce delayed transfer of care are all areas of focus for a number of Alliance members. So far so good.
Our biggest concern – which potentially undermines most of the positive aspects outlined above – is that without any specific neuro-wide priority, many of the measures that could potentially benefit people with neurological conditions may not bring about the changes that are needed. As ever, people with neurological conditions are likely to get lost in the very wide ‘long term conditions’ banner. For example, a focus on the mental health needs of people with long term conditions is great, but we know that simply extending IAPT services to cover a wider group of patients will not work for the people with neurological conditions given their specific needs. What is needed is increased awareness of neurological conditions amongst those responsible for planning and commissioning services, as well as non-specialist healthcare professionals, and this requires national level visibility. Here the plan is sadly lacking.
The document states that Integrated Care Systems (ICSs) are central to the delivery of the Long Term Plan, through bringing together local organisations to redesign care and improve population health, integrating primary and specialist care, physical and mental health services, and health with social care. So, key to implementation of the plan in relation to neurology will be what local health systems decide to do. ICSs will produce ‘system operating plans’ – this will include specialised and Clinical Commissioning Group (CCG) services. Focussing on neurological conditions will help local areas to meet some of the targets the long term plan sets out around reducing emergency admissions or addressing falls, frailty and premature death. But given the lack of national priority, how many ICSs will have a focus on neuro?
My conclusion is that the only way to make the long term plan work for people with neurological conditions is for The Alliance and our members to take the lead in engaging with ICSs (and their forerunning the Sustainability and Transformation Partnerships) to make them aware of the opportunity here. The RightCare and Getting it Right First Time data, coupled with our own patient experience survey data will provide up to date information with which to influence regionally during 2019. This will be one of our key priorities for 2019.
To read our full summary of our neurological summary and analysis of the long term plan please email email@example.com
Sarah Vibert is chief executive of The Neurological Alliance and co-chair of the National Neuro Advisory Group.
Time for national leadership on neurological care
There’s no doubt there are a lot of committed organisations and individuals across the country who do their utmost – day in, day out – to provide the best care and support they possibly can for people living with neurological conditions. But what is lacking is the overview to ensure that no-one is missing out. Sadly we all know of many cases where people have been left with little or no support, or even the wrong support, and who are effectively left to fend for themselves whilst trying to cope with a difficult and sometimes devastating neurological condition.
Indeed, it’s almost three years since the House of Commons’ Public Accounts Committee stated “services for people with these [neurological] conditions are not consistently good enough” and said that while some changes had been made at a national level, including the appointment of a national clinical director for adult neurology “these changes have not yet led to demonstrable improvements in services and outcomes for patients.” Yet later on in 2016, the post of national clinical director was lost.
Contrast this to Scotland where after years of little movement and after Sue Ryder exposed the holes in provision in neurological care across the country via our Rewrite the Future reports, the Scottish Government has now responded to calls from charities working in the sector by developing the country’s first ever action plan on neurological conditions. Currently out for consultation, the plan contains a wide range of commitments from the government on how it will work with others in the health and care system and most importantly people with neurological conditions and their families, to improve services. While there’s still a lot of detail to be hammered out, this is a significant step. If backed up with adequate resources and followed through with national leadership, it has the potential to truly improve the lives of people with neurological conditions in Scotland.
And Wales now has a neurological conditions delivery plan, with a commitment to report on progress on an annual basis.
So it’s time that England looked at what is possible so that next time the Public Accounts Committee looks at neurological services, its assertion that “it is clear that neurological conditions are not a priority for the Department of Health and NHS England” can be proved wrong. There’s no doubt that the Neurological National Advisory Group (NNAG) has an important role to play here but will only be able to take things forward if it is given appropriate support.
All of us working in the sector are committed to supporting people with neurological conditions to live their lives as fully as possible. It’s now time that the government showed the same level of commitment to everyone with a neurological condition in England.
Pamela Mackenzie is Director of Neurological Services and Scotland for Sue Ryder. She is also a Neurological Alliance Trustee.
Making neurological services better – one survey at a time
The health system and the government run on data. Without evidence on an issue, it becomes invisible – it becomes hard to understand what’s going on and even harder to work out how to make things better. There’s not enough data on the experiences of people with neurological conditions and this is one of the big problems preventing quicker and further progress in this area. It’s a problem that the Neurological Alliance’s Patient Experience Survey is designed to address. The new version of the survey is out now, and needs as many people to fill it out as possible.
This survey is one of the most important sources of information about how people with neurological conditions are managing with their conditions and with the health and care systems. It is open to people in England receiving support for their neurological conditions and it is the only survey of its kind in the country. The survey is designed to gather information about the care and support people with neurological conditions experience, as well as to understand how they are engaging with social care and the benefits systems. It’s also a really important source of information for charities working with specific neurological conditions, as the survey data can be analysed for particular conditions at the end of the process.
In a world where there is very limited information about neurology, this survey is one of the few good sources of evidence that can be called on to explain what’s wrong at the moment, make the case for change, and to help shine a light on how things might be made better. This will be the third Patient Experience Survey, and the previous surveys have been used and quoted extensively by people working in neurological policy, politicians and the NHS. To take two examples, the figures from previous surveys have been used by the Public Accounts Committee in Parliament,* and by The Neurological Alliance in highlighting the importance of improving mental health outcomes for people with neurological conditions.**
Often when you talk to people about the importance of data their eyes start to glaze over, but it really matters here. The more people that fill in the survey, the more statistically powerful the results will be, and the stronger the case for change that can be made using it. If you have a neurological condition, please take the survey if you can, and please do share the survey so that everyone who would like to is able to have their views and experiences reflected.
The survey runs until 22 March and can be accessed here.
Duncan Lugton is Policy and Public Affairs Manager (England) at Sue Ryder. He is Chair of The Neurological Alliance’s Policy Group.
Read more of Duncan’s blog posts at www.sueryder.org/policyblog.
* E.g. in Public Accounts Committee (2016). Services to people with neurological conditions: progress review.
** Neurological Alliance (2017). Parity of Esteem for People affected by Neurological Conditions Meeting the emotional, cognitive and mental health needs of neurology patients.