20th January 2020
Returning to work in 2021…
Katharine McIntosh, our Policy and External Affairs Manager, returns to work this month having been on maternity leave since April 2020. Here she writes about her hopes for 2021, and what it feels like to return to work amidst the significant impacts of COVID-19 on people with neurological conditions and the health and care system.
Back to work
I write this to the sound of my baby wailing downstairs (lunchtime – he hates his highchair). Coming back from maternity leave during a pandemic is rather strange. On the one hand the physical transition is much easier – a non-existent commute, no tiredness from travelling, and still being able to feed my baby myself. On the other, the stakes feel higher than ever, whilst my brain scrambles to get in gear again – not helped by the ongoing distraction of home life. January is always a harder time of year for most, but ever more so during a lock-down, with ongoing news of rising death tolls and the NHS being overwhelmed, and friends on furlough. So my satisfaction at being back at work feels almost inappropriate against this backdrop. I hope that some of the activities I’m undertaking help make a difference, down the line.
Things have moved on
One of the nice things about coming back after time away is that you can see where things have really moved on. I was really pleased to see the Out of the Shadows report, and am excited to get to work to try and make sure the recommendations in it come to fruition in the action plans that will follow the new Rare Diseases Framework. On the mental health front, it’s good to hear the Improving Access to Psychological Therapies neurological conditions webinar was delivered and well received, and the NNAG mental health away day report has been published. Small but important steps towards getting people with neurological conditions better mental health service access. And there are also the things that weren’t even on the table when I left to go on maternity leave, but have already been completed – such as the immense Re-start report. Though of course a huge amount of work will still be needed on this topic.
My hopes for the sector’s future
On a zoom call the other day, a sector colleague mentioned the opportunities for policy change that can occur off the back of a crisis. This chimed with me, bringing back half-forgotten theories of policy change from my Masters degree. The NHS was – or at least has become – the phoenix from the ashes of the second world war, which came about during a period of political consensus. Charlotte Augst’s thought piece that I read earlier today, on how we’re now facing the failure of our health and care system to meet even basic needs, makes it clear that the crisis element is certainly in place. So looking forward, against the dismal present, I’m daring to hope. Perhaps there is just a chance that off the back of all this, we will somehow end up with a properly funded, fully integrated health and social care system that better meets the needs of everybody with a neurological condition. And that I can play some very small part in helping to bring this about.
20th November 2020
My priorities as Chair of the Alliance
Our new Chair and Chief Executive of the MS Trust, David Martin, sets out his priorities for the future of the Alliance and care for people affected by neurological conditions.
We will be pumping up the volume at the Neuro Alliance in 2021 so that more people across the neurology sector get to have their say in the future.
Putting people at the heart of what we do
That means giving more of a platform, and a voice to the many millions of people in England with a neurological condition.
It also means enabling and amplifying the voices of many of the Alliance’s smaller members who are doing great work out across the country, and hopefully opening the door for some new faces to take seats at the decision-making table. Influence shouldn’t just be for those in large organisations or those based in and around London.
In a nutshell, that’s my manifesto as I become the Chair of the Neurological Alliance, this successful collaborative coalition of more than 70 big and small organisations.
A perfect storm?
The challenge is how we now take the step up from being good to great as the world around us transforms. The NHS Long Term Plan was silent on neurology. And the Pandemic has seen all things neuro (and of course, non-COVID work) drift even further down the pecking order.
As I step into the hot seat, it feels like the Alliance is at the eye of a perfect storm of:
- Fewer people being referred when they should be
- Fewer people getting the treatment and support they need and are experiencing more severe symptoms/progression as a result
- Fabulous new treatments coming through for MS and other conditions, but with no realistic way to deliver them.
The challenge is making neurology a priority for the post-pandemic NHS when we are all too often overshadowed by the big ticket conditions.
Trying harder and running faster might not be enough in this crowded market place.
Harnessing the power of our membership
Growing from good to great will mean regularly harnessing the power of all of our 70-plus membership alongside increasing the voice and engagement of people affected by neurological conditions. We need to listen and embrace their diverse range of stories, and support them to shape the future of neurological services. That louder voice will make us a more authentic, powerful alliance in so many ways and turbo-charge our ability to influence.
Neurology isn’t the only speciality facing the challenges in an evolving NHS. But we can at least get our house in order about the scale of the problems in front of us and turn up the voices of our membership and our beneficiaries to come up with the best possible solutions for the future.
David is our new Chair and Chief Executive of the MS Trust. Find out more about the MS Trust on their website.
12th November 2020
Out of the Shadows: our new report launched today on the need for a better deal for people with rare neurological conditions
Dr Wendy Edwards of PSPA tells us how important our new report, Out of the Shadows, is for shining a light on rare neurological conditions, to improve the care and support people with rare neurological conditions receive along the whole care pathway
Following nine months of consultation, the rare neurological conditions report, ‘Out of the Shadows’, has been launched by the Neurological Alliance today. As a member of the Neurological Alliance, PSPA has contributed to the report and supports its key recommendations, which aim to establish multi-disciplinary, joined-up care, treatment and support for people living with rare neurological conditions.
Improving equality of access, awareness, diagnostic testing, mental health support and social care is essential to improving the lives of people living with Progressive Supranuclear Palsy (PSP) or Corticobasal Degeneration (CBD). And we stand with the Neurological Alliance as they call for NHS leaders, specialised commissioners and the Government to take action.
There could be up to 10,000 people living with PSP and CBD in the UK at one time, and as is commonly experienced by the 150,000 people living with rare neurological conditions in England, access to the right care can be very difficult without a timely and specific diagnosis. In December last year, the initial findings of the PSPA funded research study PROSPECT, revealed that up to 50% of the patients they saw, were initially misdiagnosed with other neurodegenerative conditions such as Parkinson’s Disease. In addition, the findings highlighted that it can take up to two years, sometimes even longer, for a diagnosis to be confirmed. And this can be too late to provide the quality of care and support the families affected should receive.
Bradley Payne is all to aware of these issues, as he and his family struggled get the answers they needed when his dad, John, started to experience balance problems in 2016. Despite regularly falling backwards, a key symptom of PSP, due to the rareness of his condition health professionals struggled to find out what was wrong. Eventually Bradley’s dad was discharged after they said there was nothing more they could do and there was lack of community-based health support available to John and the family. PSP wasn’t fully diagnosed until after Bradley’s dad had passed away in May this year, four years after his initial symptoms began, when his condition was picked up during a post-mortem examination.
Earlier this year, a PSPA patient-based research survey identified a number of key areas where more research and information was needed, such as increased awareness of conditions like PSP in primary and secondary care, better diagnosis and improved care. On the back of these findings our supporters helped to lobby MPs about these issues, when we launched our “Join the Fight” campaign on 29 February 2020, Rare Diseases Day.
The launch of the ‘Out of the Shadows’ report has given us a great opportunity to come together as a collective with the Neurological Alliance, to shine a brighter light on the challenges people living with rare neurological conditions face and the crucial role charities play in providing support. And we hope steps are taken to ensure diagnosis improves and access to personalised and co-ordinated care is provided.
13th August 2020
“The resilience of Polio survivors seems to shine in the most difficult times”
Responding to COVID-19: voices from our membership
We have been asking our memberships to share their experiences of COVID-19. Kripen Dhrona is Operations Director at the British Polio Fellowship, one of our newest members. He shares the Fellowship’s experience of coping with COVID-19, and how they are meeting some of the challenges they have been facing.
During lockdown our team has mostly been working from home, rallying together to make it work for the Fellowship and our members. Dawn (our amazing office and finance manager) has been going into the office since April and has been the glue that has helped us to stick together. Many members I have spoken to tell me how happy they are that we are still here for them and working to meet their needs.
We have weekly Zoom staff meetings so we can get some “face time” with each other and keep the team spirit alive. It’s amazing how much we take face-to-face contact for granted – what would have been a quick shout out across the office can end up being a 20-30 email exchange.
We’ve all had our challenges over this period. For me it’s been home-schooling (which has been an eyeopener – let’s never take our teachers for granted). We’ve all worked together as a team to help each other meet these challenges. The key has been to communicate a lot. I must thank everyone in the team for doing all they can to make things as smooth as possible, and David Mitchell (Chairman) and the Board for supporting us during this time as well.
Keeping our fellowship alive and kicking
Our branches / regional groups have been finding different ways to stay in touch, including Zoom, Facebook, phone-a-friend schemes and WhatsApp. This has meant that although the branches are not actually meeting, the fellowship aspect of our wonderful organisation has remained alive and kicking. This is especially important for those who were already battling loneliness, and now may feel even more lonely. I hope they will continue to reach out to us, and we can continue to help them feel less isolated.
We have continued to help members with the usual challenges they face, but also new ones such as getting on the shielding list, getting help from their council and getting shopping delivery slots amongst many other issues.
Many members have recounted tales of the Polio outbreaks in the last century, and many parallels have been drawn between the current crisis and those dark days. The resilience and forbearance of Polio survivors always seem to shine in the most difficult times. Who knows what the new “normal” will look like, but we will face it together and continue to tackle whatever is thrown at us in the true spirit of fellowship.
The British Polio Fellowship is a membership organisation dedicated to helping and supporting people living with the effects of Polio and Post Polio Syndrome (PPS) to lead full, active lives. Find out more on the British Polio Fellowship website.
11th August 2020
Working together: an example from Hampshire
Responding to COVID-19: voices from our membership
COVID-19 has profoundly changed our lives. One possible positive change is changing how we work and collaborate with one another, as we face this virus together. We asked Anne Meader, Chair of the Hampshire Neurological Alliance and Secretary of Carers Together, to share her positive experience during these unprecedented times.
Bronze Command is go
In Hampshire, close collaboration between the voluntary sector and statutory services through this crisis has meant we have been able to respond quickly and appropriately to support people affected by neurological conditions and their carers.
The Adults’ Health and Care Department, Bronze Command consulted with carers and professionals at operational level and agreed to set up a ‘Bronze Command Workstream’ for carers. The group includes three carers support organisations, operational professionals, the commissioning team and Hampshire Young Carers.
Back in April, the group began weekly virtual meetings to discuss issues, concerns, share good ideas and ask questions. These were taken up by operational and commissioning staff and actions agreed at each meeting. This included a letter, agreed with police, which allowed identified carers to go out more often during lockdown because of the needs of the person they cared for. For example, to take the cared for person with them to supermarkets, or to go to medical appointments and visits.
Carers and professionals exchange updates at each meeting and in some cases the issues are taken to other command groups for action. For example, a letter from the Director of Adults’ Health and Care has been issued for Partnership Groups on the possible Care Act easements (brought in under the Coronavirus Act 2020) to reassure and ensure inclusion of key stakeholders if this need to happen.
It has been a coproduction process that is welcomed by service users, carers and professionals and is proving the benefit of partnership working.
There is also a Carers Partnership Board led by carers and involving health and social care professionals and voluntary organisations that ensures the implementation of the Joint Carers Strategy.
My hope is that we are able to continue to collaborate in this way after COVID-19, and for other areas across the country to do the same. It has shown, once again, the value in the voluntary sector working closely with statutory services, in building more effective and responsive support for people affected by neurological conditions and their carers.
7th July 2020
Neuro restart: Let’s work together to achieve a better normal
During COVID-19, vital neurological treatment, care and support has been severely disrupted. Georgina Carr, Chief Executive of the Neurological Alliance, explains why we’re calling for a restart of services as soon as it is safe to do so.
Accessing the right treatment, care and support to manage a neurological condition makes all the difference. Access to the right medicines could mean exhausting and distressing symptoms like pain and fatigue are more manageable. The right rehab after brain or spinal injury is a fundamental component of recovery, helping people to live as well as possible. The right therapies could reduce relapses and even slow down the progression of a condition. And access to the right specialists unlocks so much of this.
But, during COVID-19, so much of this vital neurological treatment, care and support has been severely disrupted – with devastating impacts. People with neurological conditions are amongst the most impacted by the virus, with many self-isolating, shielding, and experiencing high levels of anxiety and loneliness.
In our new report , more than 1,600 people with neurological conditions tell us what life has been like for them during this pandemic. The experiences shared here help cast a light and give a voice to the many who are struggling right now. But their stories also act as a warning of the risks to come if we don’t act. We heard examples of people having received a life changing diagnosis, only to receive no follow-up or support. Key procedures and therapies have been delayed.
Neurological health and care professionals have been doing all they can to provide some support during these unprecedented times, often over the phone or via videoconference. However, as redeployment of professionals has taken hold, many medical appointments have been cancelled or delayed leaving people with neurological conditions or suspected neurological conditions in limbo. This has to change.
And it can change. With the right support and leadership from NHS England and NHS Improvement, together with the passion, drive and expertise of the neurological community, I believe we can turn this around. We need to restart neurology services as soon as it is clinically safe to do so. Immediate action, such as ensuring the return of specialists back to their substantive roles, will help enormously. In the longer term, we need a new National Plan for Neurology that ensures that people with neurological conditions are not left behind in the wake of COVID-19.
I’ve been inspired by the way in which all corners of the neurological community – patient groups, industry, health and care professionals and more – have pulled together during this pandemic, seeking to meet this virus head on.
This collaborative effort has to continue. Only by working together will we move to a new, better normal, where people affected by a neurological condition are able to get the right treatment and support, no matter who they are or where they live. I look forward to working with the neurological community, policymakers and everyone else who shares this vision.
You can read the report here.
18th June 2020
Adapting quickly so we can be there when it matters
Responding to COVID-19: voices from our membership
Sue Ryder supports people with neurological conditions, terminal illness or bereavement. The charity’s neurological care centres across the UK offer a range of residential and community based neurological services. This includes specialist neurological rehabilitation and support tailored to the individual needs of people with a range of neurological conditions. Director of Neurological Services and Neurological Alliance Trustee, Pamela Mackenzie, blogs about how the organisation has adapted quickly to the pandemic and is supporting the NHS in the management of the crisis.
Without the right rehabilitation at the right time, people who have suffered a stroke or acquired brain injury may never get to return home or remain highly dependent. Our specialist inter-disciplinary team consists of physiotherapists, occupational therapists, speech and language therapists, neuro-psychologists, nurses and rehab assistants who use goal-orientated therapy programmes to support clients to maintain or build strength and develop skills they need for daily living to enable them to return home or to more independent living.
Our neurological rehabilitation units play an important part in the fight against COVID-19 by admitting patients from hospital who need access to specialist therapy, freeing up much-needed acute hospital beds. At the start of the pandemic, there was a high level of concern around the loss of neurological rehabilitation beds, with therapists in community services being redeployed. To ensure those who needed this specialist care could still access it, Sue Ryder Neurological Care Centre The Chantry was approached by their Clinical Commissioning Group (CCG) at the end of March to increase their capacity of neurological rehabilitation beds.
The Chantry responded swiftly to this request by adapting our current rehab model in order to be able to admit people for a shorter length of stay, and provide a level of intense rehab after which they could be discharged home safely. We have reorganised therapy space and equipment to keep residents and rehab clients safe, with residents having therapy in their rooms and in lower numbers in the dedicated gym, while practising safe social distancing.
It has been a challenge, but one from which we have learned. We have been working more collaboratively with the CCG and social workers, with twice-weekly calls to discuss referrals and discharge planning. Meetings with consultants, inter-disciplinary teams and families are all held via secure video conferencing, which the Sue Ryder IT team set up for us.
Another innovation we have rolled out across our centres is the use of tablets for clients to keep in touch with family and friends. This ability to maintain social connections has helped to reduce their loneliness, at a time when strict shielding guidance prevents visits to our centres. We have also taken the opportunity to use the tablets to update loved ones, lowering the anxiety some families are feeling.
As well as better outcomes for patients, we are looking forward to exploring opportunities to build on these new ways of collaborative and smarter working with our partners once the COVID-19 crisis is over.
Visit the Sue Ryder website.
14th May 2020
Responding to COVID-19: voices from our membership
BASIC – Brain And Spinal Injury Centre – provides community rehabilitation and support services from their Centre in Salford, Greater Manchester. Each year the team support around 500 people with acquired brain and spinal injury or long term neurological conditions, stepping in once NHS input has ceased but their recovery journey is ongoing. Chief Executive Wendy Edge blogs about how social distancing and remote service delivery might impact on the charity in the future.
On 17th March we took the difficult step of closing our Centre in order to protect our clients from COVID-19. This meant closing our specialist gym, virtual reality rehabilitation facility and café. Therapeutic activities have stopped and one to one psychology and psychotherapy sessions have been interrupted. This was very difficult because all of our services are run from our Centre and we know from the feedback we receive that for many clients BASIC is a lifeline.
We have 12 staff who provide physical, cognitive and vocational rehabilitation, mental health services, therapeutic activities and peer support. I am proud of how they have risen to the challenge of organising some of our services remotely. Like many others, we have had to implement changes fast, embrace new online platforms and just go for it. Our neuro physiotherapists have produced a number of safe exercise videos that clients can do at home; we are currently providing psychology and psychotherapy using Zoom and RemotEMDR; we have a WhapsApp group of clients keeping in touch on a regular basis; we are telephoning and emailing clients; we are posting helpful information and resources on our social media channels; we are working in partnership with a technology company to start developing a virtual reality program that people can use at home; our Café Manager is baking pies for staff at the Intensive Care Unit at our local hospital and using Instagram to post recipes and videos. Pete, our new fundraiser, made a video of the Centre whilst closed…
We are now planning how we are going to run Centre services once we re-open. We recognise that social distancing will be upon us for quite a while and we will need to manage how many people can come to the Centre at any one time in order to keep clients safe. There are a number of services and activities we will provide remotely. This is a positive step as we can now reach additional clients who find transport challenging. We will also put plans in place to keep people socially distanced within the Centre. COVID-19 may well change the way we deliver some of our services in the future as we adapt.
Like many small charities, BASIC does not have large reserves. Much of our funding has gone into innovative technology and we rely on earned income, grants and donations to keep our services running. As a result we had to furlough some staff in order to avoid redundancies and the remaining staff have taken a pay cut to help ease finances.
At the beginning of the crisis I was troubled at the thought of BASIC having to make redundancies in order to survive. We were relieved that our contract with Salford Clinical Commissioning, which makes up 14% of our income, was renewed for another year. Funders like the Lottery, Children in Need and Lloyds Foundation have been flexible and supportive. We are also very grateful to the Government’s Job Retention Scheme which will mean for now staff are safe. We don’t know what the future will hold for BASIC but what we do know is that people are incredibly generous when it comes to supporting charities and our work has always been appreciated by clients and funders.
We are currently seeking donations to help build up our reserves, to help us get through this challenging time. The most important thing is that our clients stay safe and that BASIC can be there for them, both now and in the future.
To find out more visit the BASIC website.
4th May 2020
Responding to COVID-19: voices from our membership
The Guillain-Barré & Associated Inflammatory Neuropathies (GAIN) team support people affected by Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP) in the UK and Ireland. Chief Executive Caroline Morrice blogs about the challenges facing those they support, and how the team is adapting to a new normal.
When we moved from our offices to working from home, continuity was not a big problem. We already had cloud-based systems and laptops with conference calling and our peer support volunteers can still maintain contact with patients and families using FaceTime, Skype or WhatsApp, which has been working well. Branch gatherings are now held through video conference facilitated by one of the GAIN team. We are starting to witness the development of the new post COVID-19 normal among our team and members. Not all changes are for the worse.
Receiving a diagnosis of GBS or CIDP can be an isolating experience at any time, bringing with it many questions. The GAIN helpline has seen an increase in questions about the impact of COVID-19, from people who have had a recent diagnosis, have had GBS in the past or are living with CIDP.
One question that has emerged is whether coronavirus can cause GBS. Emerging cases from Italy and one from the UK suggest it might. Five COVID-19 patients out of around 1,000 admitted to hospitals in northern Italy developed GBS. A British radiographer also recovered from both COVID-19 and GBS in a Kent hospital in April. However, it’s much too early to know if COVID-19 significantly increases the risk of GBS.
For most of our patients, daily life can continue in line with current government guidance. However, some of our patients with chronic forms (including CIDP and MMN) may be being treated with immune suppressant drugs such as steroids which requires them to be shielded. Others have co-morbidities that would have a similar impact on whether they need to be shielded, self-isolate or can go out of their home within the current guidelines.
The most difficult situations have arisen where patients recovering from GBS are being discharged from hospital earlier than normally expected, and without receiving the physical or mental rehabilitation that would normally be provided. Families have been told in some cases that this is to protect the GBS patient from the coronavirus, and in others that the beds are needed for COVID-19 patient rehabilitation. With community treatments also unavailable, these people are often left with carers visiting to carry out only the most basic tasks. This means that if they still have restricted mobility or dexterity, their ability to rehabilitate and get a full range of movement is severely hampered. Others are relying on family members and use of the internet for physiotherapy ideas. GAIN is trying to offer help with ideas and links to suitable online sites. The longer-term impact of poor rehabilitation will need to be measured as it could create greater mental and physical problems later on, putting an even bigger strain on already stretched health and social care systems.
The current situation is also making us consider our sustainability as an organisation. April to June has traditionally been a good fundraising period and our prediction is around £50k lost revenue. If the restrictions continue to Christmas, we could easily see this double. Like many less well known or smaller charities, we are unable to tap into the funds being created to deal with the impact of COVID-19 because we do not fit the criteria. The question must be: how long will it take to get the UK back on its feet and giving to charities not directly related to COVID-19 or the NHS? Only then can I confidently say whether we’ll be able to keep providing support to the people who need us.
To find out more visit the GAIN website.
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 email@example.com 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 firstname.lastname@example.org
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.