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‘I’ve seen the effects of stroke personally and professionally’

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Chloe Hammond is raising money for the Stroke Association

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.

Rodney the Pug

“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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Study reveals undetected rare neurodegenerative disorder that looks like Parkinson’s disease

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A joint study by the National Neuroscience Institute (NNI) and Singapore General Hospital (SGH) has revealed that patients who have been diagnosed with Parkinson’s disease might actually have NIID instead.

NIID is a disabling neurodegenerative condition due to a gene mutation and has no effective treatment. Symptoms of NIID include dementia, Parkinsonism, poor balance, as well as numbness and weakness in the limbs.

A patient with NIID may or may not experience symptoms, depending on age and stage of disease. The severe form of NIID is usually seen in older patients, where the disease has progressed to an advanced stage.

The team studied more than 2,000 study participants, comprising healthy individuals and those with Parkinson’s disease (PD), over more than a decade. They were surprised to find NIID-causing mutations in those diagnosed with PD.

Dr Ma Dongrui, first author of the study, says: “To our knowledge, this is the first study reporting PD patients with NOTCH2NLC gene mutations as seen in NIID patients. Thankfully, they responded to PD medications better than most PD patients do. This suggests that there must be factors that can influence why some develop PD while many others develop the more severe form of NIID.”

While analysing the NIID gene, the team found a group of healthy participants who had a “milder” form of mutation. Such mutation in the NIID gene could indicate that they are at risk of developing NIID or PD. Since NIID can go undetected, a high index of suspicion may be needed even in PD patients.

Professor Tan Eng King, deputy medical director and director of research, NNI, says: “With what we know now, it might be beneficial for clinicians to be watchful of early cognitive impairment or imaging evidence that may suggest NIID in patients diagnosed with PD. As NIID is caused by a genetic mutation, it also may be worth looking out for family members of PD patients who may show signs of NIID.

“Our findings suggest that many neurodegenerative diseases overlap and may share a common etiology. Finding a common link and uncovering the reason why a similar gene mutation leads to both mild PD and a severe form of NIID can help identify new drugs for these conditions.”

Following this study, the team plans to conduct more studies to better understand the mechanism behind NIID and identify new drugs for this condition.

More research is needed to understand if the broad clinical phenotype of NIID is related to the subtle genetic differences at the NOTCH2NLC gene locus, race or other factors. Long-term follow-up of carriers of the gene mutation with PD phenotype may provide additional clues.

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Vital rehab spaces being used for storage in Scotland

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Patients are missing out on physiotherapy and rehabilitation services because vital spaces are being de-prioritised by Scottish health boards, the Chartered Society of Physiotherapy has warned.

Reports from across Scotland reveal that rehabilitation facilities are being used for storage space and meeting rooms while the pace of re-opening and re-starting services remains slow.

During this second wave of the pandemic, physiotherapy will be critical to Covid-19 rehabilitation. Physiotherapists assist Covid and “Long Covid” patients recovering from fatigue, ongoing respiratory problems, deconditioning and poor mental health. In addition, the closure of rehabilitation services means that many non-Covid patients with long-term conditions have deteriorated, and now require more rehabilitation, alongside the ongoing needs of cardiac, stroke and respiratory referrals in the community.

Despite this huge need, rehabilitation spaces in various health boards are being moved out without relocation plans and gymnasiums are being requisitioned for other purposes such as storage and meeting rooms. In a recent survey, 47% of CSP members in Scotland said reported that a loss of rehabilitation space is why services have been unable to resume. Relocation and redesign is taking place without risk assessments, with poor planning and a lack of consultation.

Kenryck Lloyd-Jones, CSP Public Affairs and Policy Manager for Scotland, said: “The reports we are receiving from across Scotland are deeply concerning. It seems that not only are physiotherapy and rehabilitation services being slow to restart, they are being moved without relocation plans, downgraded or undervalued. We recognise the challenges in health settings and the need to re-organise, but it is essential that rehabilitation services are prioritised.

“Changes require proper consultation, risk assessment and planning. It is critical that the rehabilitation needs of people are not forgotten.”

A number of patient groups are also warning of a lack of investment and undervaluing of rehabilitation. While some rehabilitation is taking place virtually, physiotherapists still need enough space and equipment to run sessions effectively.

The CSP wrote to all regional health boards last month to urge them to prioritise rehabilitation as services are re-started, stating: “The CSP is strongly advising action to address this lag in progress, not least because the post-Covid rehabilitation needs of Scotland’s communities are pressing. Local authorities and Integrated Joint Boards also need to ensure that where rehabilitation is required in community settings, that health professionals can resume services.

“With the publication of the Scottish government’s rehabilitation framework, the emphasis must return to early intervention, reducing hospital admission, early supported discharge and improved outcomes. Musculoskeletal and community rehabilitation services are essential to this.”

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Living with chronic pain

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Serious injury solicitor Alice Hall shares an insight from Lou, founder of Northamptonshire Chronic Pain Support.

Within my role as a serious injury solicitor, I often support clients who experience chronic pain after trauma and I have seen the devastating effect that can have on the life of a sufferer.

I have also seen the importance of early and specialist professional input, and that, without this, the significant risk that people’s physical and mental health can quickly spiral downwards.

But, what does it actually mean to live with chronic pain and what support is there available to sufferers?

I spoke with Lou, the founder of Northamptonshire Chronic Pain Support (NCPS) and someone living with chronic pain.

NCPS was launched in January 2018 with the main objectives of empowering those affected by chronic pain, offering support and guidance to those affected, education, and a space for sufferers to talk in a safe, positive and non-judgemental environment.

Since then, the group has been working hard to support people affected by chronic pain in various ways, including weekly group meetings, social media support and, more recently during lockdown, virtual meetings and events.

Lou’s own experience of chronic pain began following an accident at work in 2012. She has since been diagnosed with fibromyalgia and arthritis.

I spoke with Lou about her own experience with chronic pain and her plans for NCPS.Lou’s storyFrom the beginning…

“Before my accident, I was very independent. I worked full-time in a physical job, had a busy and active social life and had lots of plans with my partner. Sadly, everything changed in the blink of an eye when I suffered an accident at work and life has never been the same since.

“It was eventually discovered that I had suffered an injury to my back. At the time, the risks of surgery were deemed too great and I was advised against that route I felt left with very few options other than to rely on incredibly powerful opiate medication and I began to slip into a very dark and lonely hole.

“I had lost my job, friends and any sort of quality of life I had known it previously. I felt like I had lost control of everything in my life and it had been completely consumed by chronic pain. It got to the point that I felt suicidal and I just couldn’t see any point in carrying on.

“Seeking help and support…I was eventually referred to a chronic pain course by my GP and, although things got off to a bit of a rocky start, at the end of the course I felt, for the first time, like there was hope. I had spent time with people just like me, living with pain, but carrying on with life as best they could. It showed me a different perspective and, from there, gradually things started to improve.

“I managed to return to work, albeit part-time and in a different job. Unfortunately, things took another turn in 2016. I was then deemed an appropriate candidate for surgery, but it was unfortunately unsuccessful and actually left me in an even worse off position. I had some counselling, but felt like I didn’t really get anywhere.

“By chance, I discovered a charity called A Way With Pain that was holding meetings in my local area in the summer of 2016.

“I went to my first meeting and felt like it was a step in the right direction. NCPS…In October 2016 I decided that, in helping myself, I wanted to be able to help others, like me, who felt that they had lost everything to chronic pain.

“I could see just how much the support of sitting and talking with others who were going through similar experiences to you was comforting. I began studying and obtained a Level 2 in Listening Skills in June 2017 awarded by the Counselling and Psychotherapy Central Awarding Body.

“I continued to grow the support groups and NCPS was founded. Since the early days when there was just a handful of people attending meetings, we have grown and grown and now support a large group of people across the Northamptonshire area.

“We have also set up a Facebook group and Twitter page, which is another forum to provide support to our service users and this has been particularly vital during the lockdown. We have also had to move our face-to-face meetings to Zoom meetings.

“The future for NCPS…As someone living with chronic pain, I know all too well just how difficult it is to find the right, or any, support at times and being able to help and support others is something that I am keen to continue. In the short term, we hope to continue using technology to support our service users, both via online meetings and events, Facebook, Twitter and other social media platforms.

“I hope that our presence will continue to grow and we will be able to reach even more people who need our help and support.”

From my experience, it is fair to say that cases involving those who suffer with a chronic pain condition – whether it be fibromyalgia, somatic symptom disorder, or any other – can be complex and the importance of specialist pain management evidence cannot be understated.

Thought must also be given to what, if any, other expert evidence should be knitted together alongside pain management evidence – orthopaedic, psychiatric, physiotherapy, care, and occupational therapy.

Indeed, these cases often require a multi-disciplinary team approach when it comes to expert evidence due to the nature of many pain conditions and the multifaceted, physiological and psychiatric components.

Equally, and particularly given the often difficult experiences of Claimants in trying to access pain management support and treatment via the NHS, experts in the litigation must be encouraged to provide detailed recommendations for any treatment, and costings of the same, with interim payments proactively being sought where appropriate so that Claimants are given the opportunity to access rehabilitation on a private basis where this is necessary.

Further thought should also be given to the importance of detailed witness evidence in cases involving chronic pain. Not only should detailed statements be taken from the Claimant, but also from their family, friends, and case manager where appropriate.

Whilst in many ways the concept of chronic pain is much more widely understood and accepted than it once was, more can still be done so that parties to litigation do not underestimate the impact of chronic pain and needs of the Claimant.

Indeed, chronic pain can by its very nature be invisible, variable and often unpredictable and that can cause potentially significant evidential issues at a critical point in the litigation later down the line if those points are not addressed proactively in detail via witness evidence at the outset.

For Claimants suffering with chronic pain, early access to specialist rehabilitation and support is essential and will enable an injured Claimant to restore their life to the best possible position, and to maximise their future potential too, whether that be in terms of returning to employment, engaging in pre-injury hobbies or considering voluntary work.

Chronic pain is a very individual condition and no one person’s experience will be the same as the next, and so of course rehabilitation must be tailored appropriately and sensitively to every individual’s needs and wishes.

Injured people must be supported to explore all options that they wish, including, for example, holistic approaches alongside more traditional treatments and therapies if appropriate, as guided by expert evidence.

You can find our further information about Northamptonshire Chronic Pain Support (NCPS) at: https://www.ncpsuk.com/

Alice Hall is a serious injury solicitor at Irwin Mitchell.

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