Up to 45,000 patients with advanced MS are not getting the support they need from specialist health services, a national charity has warned.
According to the MS Trust, transformative drugs which have become available for primary and secondary progressive MS, offer these patients a better quality of life, but have drained NHS resources, leaving specialist MS centres underfunded.
There are currently around 107,000 people living with MS in the UK, but only 20,000 of those qualify for these new drugs.
“It seems to be a huge weight of people here who are being forgotten,” David Martin, CEO of the MS Trust tells NR Times.
“It’s something that we’re trying to get the NHS sector to address a little bit more. We think the drugs are fantastic, it’s making a real difference, but it’s only 20,000 of the 107,000 people, and it’s all those other people that we think there’s got to be a focus on.”
The drugs, which mostly benefit younger people in the early stages of their ‘MS journey’ can relieve symptoms and postpone the need for the use of a wheelchair or walking stick.
However, Martin continues: “For about a fifth of the people it’s really good news, the challenge is, there’s many people who the drugs are not appropriate for, and they are looking for support from the health services. Almost all of the resources from the NHS at the moment are being sucked into those early stages – giving people the drugs, doing the monitoring and supporting those people – which is great, but it means that many people are being overlooked.
“You’ve got a lot of people who are not getting a huge amount of support from the specialist services in the NHS – they’ve almost been lost to the NHS system.”
The MS Trust reports an increase in GP appointments, A&E visits and unplanned hospital admissions, as a result of specialist MS services not getting the funding they need.
Martin adds: “For those people in the latter stages of the MS journey, they’re not really getting that much in the way of support from specialist MS centres.
“They’re getting a bit of support from GPs but what that means is they’re having to go to GPs or A&E if they’ve got a problem with their urinary tracts or they’ve got a fracture.”
Last year the MS Trust launched its Advanced MS Champions Programme, which aims to provide a package of support for those with advanced MS, including funding 90 per cent of the cost of a specialist health professional within the MS team, whose focus is to care for those individuals.
There are currently six pilots of the scheme being rolled out across the UK.
Martin added: “What we’re trying to do is focus on those 45,000 people who are getting next to no support, to see if we can be a navigator, to join up the support that does exist at the moment, and bring some of those people with advanced MS back into the MS system.”
NR Times has approached NHS England for comment.
The dancing Queen who refused to give up
A spinal injury should have brought Erin Pollitt’s professional dance career crashing to an untimely end but she ignored the doubters and proved everybody wrong, as NR Times reports.
Erin Pollitt suffered a serious spinal injury in her second year of professional dance training.
While practicing a difficult move during rehearsals at the Northern School for Contemporary Dance in Leeds, she fell to the floor and suddenly felt a sharp pain at the base of her spine.
She was booked in to see the school’s physio the next day, feeling the full impact of the fall after being unable to walk properly or move as she normally could.
Here began the long process of getting to the bottom of what was wrong with her.
After numerous trips to the physio and multiple scans, it was eventually revealed that she had compressed a spinal disc in her lower back which was pressing against a nerve.
Furthermore, there was ligament damage in her pelvis leaving Erin, 24, in serious pain.
After seeing a top consultant for spinal injuries she was given the news she had been dreading.
Erin was told she would likely need to end her career as a dancer.
Most would see this as a chapter of their life ending and reluctantly accept what had been lost. But Erin simply saw it as a challenge.
Speaking to NR Times, Erin says her approach to dealing with her injury completely changed after her conversation with the consultant.
“I didn’t take no for an answer,” she says. “Up until then I had just been fumbling through the pain and hadn’t really put anything in place to help rehabilitate myself.
“But after he said that, I thought I’m going to really focus on getting better so that I don’t have to stop my dance career.”
From here Erin began what was a year long rehabilitation process, beginning with restoring simple and small movements.
Then she progressed to a short dance session, where her pain would only allow her to practice for just ten minutes initially.
“It was very slow, tiny movements to start with,” Erin says. “Very slowly, I’d do around ten minutes of dancing and then it had to stop. And then the next week maybe I’d push it to 15, so it was so slow.
“It was a really long process of core strengthening and Pilates and relearning how to support the muscles around my spine.
“The process wasn’t necessarily learning to move again, but I was learning to articulate that part of my body in a much safer way.”
The rehabilitation process was not only physically painful for Erin, but it was also a mental struggle.
Having to sit on the sidelines and watch her peers was difficult, particularly amid the fear that she may never be able to join them again.
“It was incredibly tough, and also very lonely because everyone else was training and I had to sit every day and watch them do what I couldn’t.
“Because we were all in a three year training programme together, I just felt like I was missing out on so much time and watching everyone else get ahead of me.
“The thought of never being able to dance again and thinking I’m going to have to live with this pain for the rest of my life was really scary.
“I remember so many times thinking ‘I don’t know how I’m going to carry on with this level of pain’ or not being able to do what I’ve always wanted to.”
Having persisted with her rehabilitation, Erin eventually returned to the Northern School for Contemporary Dance where she was able to graduate.
She then went on to complete a Masters at London Contemporary Dance School where she used her experiences to complete her thesis on the psychological impact of injury on dancers.
Erin spoke to numerous others who had endured something similar and her work was of such a high standard that it was published in the Journal of Dance Medicine and Science.
“I thought about how I can do some research that may benefit people going through a similar thing, so I began reading about how injury can affect a dancer’s mental health.
“It was so difficult for me not only physically, but to just keep going and keep believing that I will get better.
“Eventually I put something together that felt quite important, to talk about the fact that injury is something that most dancers will go through and it’s actually really traumatic to deal with.
“I feel quite proud that, although at the time it was awful, something positive came about and I’ve been able to contribute to the conversation around that.”
Erin has since set up her own dance school, Matter of Fact, which launched last year.
After graduating she also went on to perform with a range of contemporary dance companies across Europe, in countries such as Portugal, Switzerland and Italy.
This adds to her already impressive career, having competed at international level in rhythmic gymnastics as a teenager.
“I’m looking forward to doing lots more performing now that the theatres are opening up again, because I am healthy now and I am getting back on that stage.
“I’m also looking forward to growing my company and doing more performances and choreographing for different organisations and companies.
“With the research I did for my thesis I’d really like to, in time, progress that further and see what else I can do.
“In many years time I’d like to work with injured dancers, helping them through a tough time and being that person there to support them.”
Parliament launches concussion in sport inquiry
A Parliamentary inquiry is to be held to examine the link between sport and long-term brain injury.
The Digital, Culture, Media and Sport (DCMS) Committee will look into the issue over two sessions, the first of which will be held next Tuesday.
Through the inquiry, the cross-party group of MPs will consider scientific evidence for links between head trauma and dementia and how risks could be mitigated.
It comes at a time when legal actions across football and both rugby codes are being considered or have already been launched, and follows the 2019 FIELD study which found professional footballers were three-and-a-half times more likely to die of neurodegenerative disease than age-matched members of the population.
Announcing the inquiry, DCMS Committee Chair Julian Knight MP said: “This inquiry will consider scientific evidence to link sport with the incidence of long-term brain injury.
“We will look particularly at what role national governing bodies should be taking and their responsibilities to understand risks involved for players and what actions might be taken to mitigate them.
“We’re seeing a number of cases involving brain injury in sport likely to reach the doors of our law courts and we will also look at the implications for sport in the longer term of any successful legal claim.”
Among those invited to contribute to the inquiry is brain injury charity Headway, which has campaigned on the issue of better safety in sport for years.
Chief Executive Peter McCabe will outline the charity’s long-standing Concussion Aware campaign and its aims of improving concussion awareness, particularly at grassroots and junior levels.
He will also call on the Government to encourage sports’ governing bodies to do more to address the issue.
“Increased scrutiny from this influential cross-party group of MPs is very much welcomed. We hope it will lead to greater pressure on all sports to do more to instil a cultural change in the way head injuries are perceived and treated,” he says.
“It has taken many years of campaigning and Headway repeatedly speaking out in the national media to get to this stage.
“There has been progress in that time, but there still remains a lot to do in terms of elite-level sport consistently setting a good example for grassroots sport to follow.
“We look forward to sharing the charity’s views with the Committee.”
Dr Michael Grey, UKABIF trustee, will also be taking part in the inquiry.
“We are really pleased to be involved in this inquiry,” he says.
“UKABIF has been raising issues surrounding brain injury in sport for a number of years and devoted a section of the APPG Report: Neurorehabilitation and Acquired Brain Injury: A Time for Change to this subject setting out some clear recommendations.
“We will be able to ensure that our evidence-based recommendations are heard at the highest level.”
‘I’ve seen the effects of stroke personally and professionally’
As a nurse working with stroke patients, Chloe Hammond supports people in their recovery every day – but the effects of stroke have also touched her own family. Here, she shares her reasons for fundraising for survivors by walking 1.2 million steps.
A stroke nurse has committed to walking 1.2 million steps to raise money for the Stroke Association, having dealt with the effects of stroke in both her personal and professional life.
Chloe Hammond is completing the challenge as a symbolic reminder of the 1.2 million stroke survivors in the UK, and aims to complete it by walking 10,000 steps a day for 120 days.
Chloe, a nurse at Sunderland Royal Hospital, works in neurorehabilitation but is currently deployed to the hospital’s acute stroke ward, where she sees first-hand the impact that stroke can have in the earliest days of recovery.
And with two members of her own family having had a stroke, she is well aware, both personally and professionally, of the impact it can have on individuals and their loved ones.
“Being on the acute ward and seeing the acute side has been quite challenging, as usually I’m working with patients while they’re in recovery and having their rehabilitation,” says Chloe.
“I absolutely love seeing the progress they are making in neuro rehab, but I’m really pleased to be in the acute setting giving these patients support in the very early stages after their stroke.
“I’ve had two family members who have had haemorrhagic strokes, so I know all too well the effect this has on a person and their family, I’ve been there myself and experience it first-hand.
“So by raising money for the Stroke Association through the Stride for Stroke challenge, we can hopefully make a big difference to them after they are discharged from hospital.”
Currently, with restrictions on visiting, Chloe and her colleagues are giving medical, practical and emotional support to patients in the absence of visits from their families.
“The pandemic, and particularly the lack of visits, has definitely taken a massive mental health toll on a lot of patients,” says Chloe.
“Often, where they could have further rehabilitation in hospital, they say they don’t want it as they don’t want to be here, they want to be with their family at home. So that’s hard, but we support them every step of the way while they’re with us.
“I think for families too, as they can’t come in and see their loved ones, they don’t fully know the impact the stroke has had on them as they haven’t seen the effects for themselves. So they don’t really know what to expect when their loved one comes home.
“But we’re always on hand to give all the support we can, and we often help patients use the technology like FaceTime so they can have those calls with their loved ones, which are now more important than ever.”
Through the Stride for Stroke challenge, Chloe is aiming to raise vital funds, as well as awareness of the importance of exercise which can prove crucial in reducing risk of stroke.
“I’m trying to walk to and from work and do a little bit more exercise than I normally would on my days off to get to the 1.2 million target,” says Chloe.
“I’m enjoying going on some longer walks with my pug Rodney too, he gets me out even despite the bad weather and snow we’ve had recently.
“But exercise is so important, and particularly working on the acute stroke ward at the minute, it reminds you of how important it really is to keep active, and do all you can to reduce the risk factors.”
* To support Chloe in the Stride for Stroke challenge, visit www.justgiving.com/chloe-hammond6
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