12th March 2020
Chief Exec Reflects
In our new blog post, below, our Chief Executive Georgina Carr reflects on her first month working at The Neurological Alliance.
What a difference a month makes
I have been in post for just over six weeks now, and it has been a fantastic whirlwind of listening, learning and very warm welcomes from across the sector. I have been struck by the sheer passion and level of commitment from all corners of the neurological community to improve neurological care, and how much opportunity there is to drive collective action. Although the neurological community is of course wonderfully diverse, there are so many shared challenges. So I wanted to provide a few reflections on these, below.
Data is power. Or rather, accurate, correctly analysed data is power. Yet, for too many neurological conditions, particularly rare conditions, there just simply isn’t the data available to build a robust picture of prevalence or need or indeed spend on services. Of course, Neuro Numbers and our Patient Experience Survey are important parts of the picture here, but there are still many gaps elsewhere.
At the same time, there have never been such rich datasets for us to harness in order to drive service improvement and innovation. We co-chair the Neuro Intelligence Collaborative, an incredibly important initiative that seeks to better understand and utilise data within neurology. Together with members, I look forward to bringing together multiple sources of data to build an even richer picture of what works in neurological care. At the same time, I hope that we can drive improvements in the quality of data that is collected, and address the gaps that do exist in outpatient data, patient outcomes and spend.
Fit for the future
Many people I have spoken to have spoken of tremendous excitement, but also anxiety, about the future of neurology and neuro services. There is an exciting treatment pipeline for multiple neurological conditions, many of which have the potential to provide treatment options for people who currently have none.
But services are already struggling to meet current needs. Our patient experience survey showed that one in two people with neurological conditions experienced delays in accessing healthcare, and 29% had to wait more than year to see a neurologist. In fact, recent Association of British Neurologists data showed that for every one neurologist in the UK, France and Germany have three. No wonder people are experiencing delays in accessing the right support.
We need to ensure there is appropriate investment and support so that people are able to access the right treatment and care at the right time. We need to learn and translate from all of the fantastic ways in which services are innovating, in order to make the most out of specialist expertise and ensure effective and efficient provision. That’s why we need NHS England to commit to a National Neurological Plan, which sets out how we will ensure services are fit for the future, better understand and scale up good practice, and truly put people affected by neurological conditions in control of their treatment, care and support.
Thinking beyond NHS care
Our NHS is a wonderful, vital asset. Of course. But too often, people are also experiencing significant problems in accessing the support they need beyond the NHS. We know that living with a neurological condition can cost up to £200 a week in extra costs. Yet, getting the financial support required, especially for those whose ability to work is restricted, is an exceptionally stressful, lengthy and often wholly inaccurate endeavour. I have spoken with so many members who have told me of the lengthy delays in accessing Personal Independence Payments (PIP) in particular, with many experiencing repeated assessments, repeated reviews of their case, and waiting a year or more for the right outcome.
Access to appropriate social care is near impossible, and is too often dictated by a person’s financial circumstances, rather than the support required. And we know that demand is increasing, but Government spend isn’t keeping up. In real terms (ie, adjusting for inflation), total expenditure is still £300 million below the level it was in 2010/11, despite increasing demand for services.
The value of the right social care, of the right financial support, to enable people with neurological conditions to live an independent life cannot be understated. The UK Government has committed to bringing forward proposals on both social care and disability benefits – these can’t come soon enough. We are committed to working with those who also want to see urgent reform, so that people can get the support they critically need.
I would like to say a huge thank you to everyone who has supported my first few weeks at the Alliance. I’ve learnt an awful lot already, and am still making my way through induction meetings, still listening and learning about issues I’ve covered here, as well as those I haven’t. I look forward to working with you in continuing to collectively call for much needed improvements to neurological treatment, care and support. My door is always open – please don’t hesitate to get in touch.
– Georgina Carr, Chief Executive
Why I’ve launched a petition for better social care – Nikkita Otu
My name is Nikkita Otu. I was 18 when I was diagnosed with severe epilepsy, but I started having seizures as early as 18 months old. There were years in-between when I didn’t have any seizures, but when they returned, they got worse. Now, I’m 29 years old, and a mum to my son. I can have up to 30 seizures a day. Sometimes I have to be put into a coma to control them. It’s been a lifelong thing.
I studied media and advertising at school, and I’d love to get back to that. But my epilepsy is holding me back. When people ask me what I do, it makes me feel quite worthless when I say “nothing”, because sometimes people assume I’m lazy. My illness dictates everything about my life, including when I go to sleep, when I can leave the house, and other very basic things like that. It takes away my sense of self. I just want to be whatever it is to be me again. I haven’t been myself for a long time.
I’d like to get back a sense of normality, because there is no normality with epilepsy. This has affected my mental health greatly – it’s a constant battle between seizures and anxiety. It feels more like existing than living. Everyone’s waiting for the next seizure, whether that’s in an hour or a day. It’s a constant ticking clock for everyone in my family. I want to be able to go out and do things with my son. He’s only 9 years old but has seen me in the ICU (intensive care unit), he’s seen me fall down the stairs, and other things that no mother wants their son to witness. He doesn’t like being alone with me in case I have a really bad seizure. I can’t take him to the cinema or swimming. If no one’s around to take us out, we just sit in the house.
My care needs are so severe, I need someone to be with me for the majority of the day. They have to be able to administer my medication, take me to appointments, to be with me when I have seizures, to look after me so I can have a bath, and to be with me to keep me safe when I make myself something to eat. I’d love a minimum of 2 days a week where I have a carer so I can bathe safely, make a cup of tea, or maybe leave the house. These are basic human needs.
When I turned to the council to have my needs assessed, they weren’t at all helpful. I was told I could go into residential care and have my son put into foster care, or I could have a district nurse visit me three times a day for five minutes. I can’t afford a private carer – it’d cost me about £30,000 a year. But I’m left with no option but to continue relying on my elderly father for care. My dad does everything he can, but I don’t want him to have to. I find it demoralising.
There are others like me in desperate need of help. It feels as though decision makers don’t care at all. If I could, I would ask them: would you want to go into residential care at 29? Would you put your son into foster care? At some point my dad is going to die. Then what do I do?
I’m calling on my local authority, and all political parties, to take my needs seriously. Please support me by signing the petition. Help me get the care I need, so I can have a life.
Nikkita Otu is an expert by experience and media volunteer for The Neurological Alliance
Our members’ views matter
Earlier in 2019, our members completed The Neurological Alliance members’ survey. We are delighted to report that 93% of those members who completed the survey state that they are either very satisfied or satisfied with their membership. Additionally, 96% describe our membership as either excellent or good value for money, and that when they communicate with us, we listen!
Members praise our membership benefits including, information about policy developments via newsletters, webinars and meetings. Our collaborative approach to work has also been commended. One member describes working with us as a privilege and that ‘joining forces increases our effectiveness and voice’. Another describes how they ‘really value’ The Neurological Alliance ‘for bringing issues together nationally’.
We appreciate that there is more that we can do to improve not only the experience of our members but accomplish our wider aims and objectives. One of our members said they would ‘like to see more virtual meetings for those organisations not able to travel to London.’ We are now looking to increase our use of online conference services. Thank you to all those members who completed the survey. Your feedback is valued and appreciated!
Fiona Tate is Communications Assistant at The Neurological Alliance
Working together for better mental health
– Sam Carney, Senior Policy and Campaigns Adviser (Dementia and Mental Health), Parkinson’s UK
We hear through our helpline and Parkinson’s Local Advisers more and more cases of people with the condition struggling to get the mental health support they need. People with Parkinson’s can experience a number of mental health and cognitive issues including anxiety, depression, impulse control disorders, hallucinations, delusions and dementia.
Last year the All-Party Parliamentary Group (APPG) on Parkinson’s report ‘Mental health matters too’ laid bare the fact that the mental health symptoms people with Parkinson’s experience are not taken as seriously as their physical symptoms.
A survey by Parkinson’s UK found that 70% of respondents with Parkinson’s said that mental health impacts their quality of life. Over 70% stated their mental health affected their ability to socialise, and nearly 50% reported it was harder to leave the house because of their mental health.
We therefore welcome the Neurological Alliance Mental Health Consensus Statement on mental, emotional and cognitive health provision. It sets out what every person with a neurological condition should expect in order to receive the high quality mental health care they need. These measures reflect many of the areas of care that need to improve for people with Parkinson’s, including having joined up care from physical and mental health teams, having access to specialised mental health services when needed and having carers and also ensuring that family members mental health needs are addressed.
To make these ambitions a reality the consensus statement makes a number of recommendations for change. They reflect the calls made in the ‘Mental health matters too’ report, and represent concrete changes that would improve the mental health care, all people with neurological conditions receive. Using the statement we can demonstrate to decision makers the issues that affect the wider neurological community and the impact improvements in mental health care could have.
Through uniting behind the Mental Health Consensus Statement and using it in our conversations with decision makers we will improve mental health care for people with neurological conditions.
The Neurological Alliance mental health sub-group developed this consensus statement and would welcome involvement from other organisations. If your supporters are affected by mental health concerns please contact Katharine McIntosh.
WORLD FND WEEK – 7th to 13th April 2019 #FNDAware campaign
Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system and how the brain and body send and receive signals. Neurological symptoms range from paralysis, weakness, fits, seizures, fatigue, sensory issues, gait issues, & many more. Functional symptoms in their wider definition are the second commonest reason for a new neurology consultation, with functional neurological disorders such as functional movement disorders or dissociative (non-epileptic) seizures accounting for 6% of referrals, which is more than Multiple Sclerosis 4% and Parkinson’s disease 5%. It is difficult to attribute costs of FND, but it is estimated that medically unexplained symptoms in general, of which FND forms a major part, are estimated to account for 10% of total NHS expenditure and have a total direct and indirect cost of £18bn per year in England. NHS in England is also estimated to spend at least £3 billion each year attempting to diagnose and treat medically unexplained symptoms (Bermingham et al 2010).
“Medical professionals often have little understanding of the disorder and do not understand that this is a common, severe disorder that is not under the patient’s control” says Dr Tim Nicholson, Consultant Neuropsychiatrist from South London & Maudsley Hospital.
Individuals diagnosed with Functional Neurological Disorder rarely avoid stigma brought on by misconceptions and stereotypes, resulting in a lack of compassionate care and effective treatment plans. Through a collaborative approach between the medical community and patients, FND Hope UK aims to change how functional symptoms are understood and defined.
- FND affects twice as many women than it does men
- FND can affect anyone but is rare under the age of 10 years
- Multidisciplinary treatments have a 50% success rate
WORLD FND WEEK awareness campaign is asking people to become more #FNDAware and calls for awareness and education about FND to combat this disabling illness that wreaks havoc and financial chaos on families, often for long periods of time.
For more information about Functional Neurological Disorder (FND) or FND Hope UK, visit www.fndhope.org. Media Enquiries – For more information please contact: Dawn Golder at firstname.lastname@example.org or call 07827966044.
Dawn Golder is Executive Director of FND Hope UK
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.