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Community rehab

Charities and community rehab groups pull together

Brain injury charity UKABIF has asked healthcare authorities to include people with acquired brain injury (ABI) on the list of those most vulnerable and at-risk during the COVID-19 crisis.

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It contacted the Department of Health & Social Care, NHS England and the Chief Medical Officer to request that ABI was included on the list of ‘vulnerable’ conditions.

The change would result in the NHS responding to ABI people as high risk and any advice and support through 111 and 999 would be more likely to be treated as a priority.

At the time of writing ABI is not directly referenced by Public Health England as vulnerable (please check online www.gov.uk for subsequent changes).

Currently it outlines: “Chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy”.

Meanwhile, UKABIF has been involved in efforts by the Community Rehabilitation Alliance (CRA) to help organisations involved in community rehab to support each other through the pandemic.

The CRA brings together around 20 charities and healthcare bodies, including the Chartered Society of Physiotherapy, the Royal College of Occupational Therapists, the Stroke Association and the MS Society.

As the COVID-19 crisis deepened, members of the alliance held a conference call and, as well as sharing their insights into managing the challenges of the coronavirus, they came up with a list of actions.

These included the creation of a virtual workspace enabling members of the alliance to share ideas and collaborate during the crisis.

A “self-care hub” is also being developed with useful information for people with long-term conditions, while new community rehab online resources are also being evaluated. Alliance members also agreed to explore how they could work more closely with the fitness industry while social distancing and the lockdown continue.

CRA member ukactive, which aims to improve fitness among the British public, agreed to look into ways of supporting community rehab provision.

Elsewhere, charities have been stepping up their efforts to look after vulnerable people while face-to-face support remains off limits. The Child Brain Injury Trust has launched a virtual brain injury service for families.

It offers assessments, advice on benefits and funding, parental and sibling support, educational information, legal support and further signposting.

SameYou, the brain injury charity set up by Game of Thrones star Emilia Clarke, has been posting daily ‘Pockets of Calm’ on its social media channels.

They feature tips and stories to help people through this time.

The charity has also launched an emergency response campaign for brain injury and stroke patients.

Working with partners Spaulding Rehabilitation Hospital in Boston and UCL in England, it is fundraising to provide new virtual rehabilitation clinics for brain injury and stroke patients during COVID-19.

On a regional level, Headway Preston and Chorley has been offering regular weekly “friendship calls” over phone.

They can be arranged on the same day and time each week and are aimed at lessening the chances of people feeling isolated and lonely.

Individuals affected by have also been doing their bit. Anne Johnston, a former winner of the UKABIF Film Award, has made a film for fellow brain injury survivors on how to survive self isolation during COVID-19 lockdown.

Anne tells viewers: “Here are nine tips so you can learn how to survive self-isolation during coronavirus. As a brain injury warrior, self-isolation has been a big part of my life for two years. I hope these tips help you while we’re social distancing.”

Also, Emma Thompson, a physiotherapist from Addenbrookes Hospital in Cambridge, has uploaded a workout video to YouTube to help people with reduced mobility to exercise.

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Community rehab

‘SLT took on even greater importance during lockdown’

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“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe."

Through community speech and language therapy continuing even during the height of lockdown, many patients received a “massive boost” from the progress being made in regaining or maintaining their communication and swallowing abilities.

While many therapies were stopped or conducted remotely, speech and language therapy (SLT) continued in-person throughout the pandemic, supporting people in their recovery from brain injury or stroke, as well as working with those with progressive neurological conditions.

“With there being a complete hold on a lot of NHS therapy during the first lockdown, speech and language therapy was very important to so many people, so to be able to progress in that area was a massive boost during a difficult time,” says speech and language therapist Jennifer Benson.

“For many patients I saw, they felt that there was so much focus on COVID they had been forgotten – but to have a voice is such a fundamental part of life, and for a lot of patients, particularly those with progressive conditions, it can’t wait.

“It’s a privilege to be able to support people with this, but particularly to be there for them during the most trying times.”

The continued intervention of SLT during lockdown helped many patients significantly – but for therapists, their role was frequently, and unexpectedly, expanded with the cancellation of many other community services.

“We were finding we’d be going to people’s houses and our role was broadening, we’d need a double appointment to help get through the other issues they had and trying to offer support,” says Jennifer, who worked in both private and NHS roles across Yorkshire and Lincolnshire during the pandemic.

“As speech and language therapists, we are very clear on our role boundaries, and we’re very keen to work with our MDT colleagues, but during those times we had to become used to dealing with things like recognising when a person needed end of life care, and supporting families when GPs weren’t coming out to see them.

Jennifer Benson – speech and language therapist

“One case that really stands out was one gentleman with some early signs of Parkinson’s, he’d had a telephone appointment with a neurologist but nothing else.

“He’d then had a repeat prescription from his GP with some Parkinson’s medication on it. He queried it, saying this isn’t mine, but then got an email telling him he had Parkinson’s disease. He and his wife were in total shock.

“In ordinary times, there would be Parkinson’s nurses visiting to pick up on that, but in the absence of face to face appointments, SLTs were in a position of needing to offer more support and information about Parkinson’s in general. We know our stuff and we’re good at explaining things simply to people, so it was a natural extension of our skills.”

Against a constantly-changing situation during the pandemic, assessing the need for visits against the safety factor of not doing so, was a fine balance.

“All through the pandemic, face to face appointments have been risk assessed, and SLTs all over the country have risen to the challenge of using teletherapy when this has been the safer option,” says Jennifer.

“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe.

“Very often our swallowing assessments and interventions would be helping to prevent a hospital admission, so we were also doing our bit to keep people at home and prevent more strain on the hospital system, and keeping them out of the way of potentially catching COVID in hospital too.”

Jennifer, who has more than 20 years’ experience in the field, continued her appointments using PPE for the benefit of the patients who needed her.

“I became used to wearing a surgical face mask, plastic pinny and gloves, even though the mask made communication so much more difficult. I had a boot full of this equipment and many a day had to battle the North Sea wind while putting my pinny on!,” Jennifer recalls.

“But it was all such an unknown, and people were needing to be seen more than ever, very often I was all they had, so you just get on with it.

“It was only when I got my first vaccine that I realised what a relief it was. Working in the community, you rely on people reporting symptoms and of course many cases are asymptomatic. You have to hope your PPE really does keep you and everyone else safe.

“There were care homes I was in which had outbreaks two days later, and you maybe do think about your own safety, but I think it’s only on reflection you realise how anxiety-provoking it really was.

“I’m very pleased I have so many years of experience, I’ve seen a lot of things, so that helped me to get through that time – for those who were new to it, it must have been very hard.”

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Community rehab

Music group launched to support BAME community

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Leicester Musical Memory Box is launching its online music project Geet Sangeet

A music group established to support people living with dementia, memory loss and brain injury has received funding to launch an online project for the South Asian and BAME community.

Leicester Musical Memory Box (LMMBox) was founded in July 2018, and since that time has grown from one group in the city to six, providing interactive music sessions for people of all ages and backgrounds, including a group specific to the South Asian community.

The group – which has two staff members who are fluent in Gujarati, Hindi, Punjabi and Urdu – aims to provide the local community with a supportive network and a safe space to explore the unique challenges that a brain injury may bring to individuals, as well as their families and carers.

The new online music project is named ‘Geet Sangeet’ – translated as ‘Songs Sung Together’ – and will incorporate music and cultural references specific to the South Asian community, led by group leader Beena Masand from LMMBox.

Each session will begin with gentle exercises to warm up the body and brain, followed by singing and discussion about various music, songs, and media.

Attendees will also receive their own ‘musical memory box’ in a bag to help increase the interactivity of the sessions.

The project has received funding from the new Local Connections Fund, and is in collaboration with Headway Leicester.

Music has proven benefits for people with memory problems or a brain injury, including enabling people to connect with past experience and enabling freedom of expression, confidence and independence.

Attendance at the groups also helps to improve mood and reduce feelings of social isolation.

“We know we are providing a vital service to our members and receive enquiries regularly,” says Kyle Newman, group leader and co-director of LMMBox.

“In spite of the lockdown, we are thrilled to be able to once again provide a culturally specific group for the South Asian community.

“We also know that the group leader needs to come from that community and have the music and cultural knowledge to be able to engage participants effectively.”

“We are delighted to collaborate with LMMBox and reach out to more people across Leicester who have been affected by brain injury,” adds Mary Goulty, service manager at Headway Leicester.

“There is a clear need for a support service within the BAME community and that’s why we launched our BAME group last year, which is providing a vital lifeline to brain injury survivors we support and their families.”

To contact LMMBox, visit www.leicestermusicalmemorybox.co.uk

For support with brain injury in the Leicester community, visit www.headwayleicester.org.uk.

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Community rehab

‘Huge positive progress – but change still needs to happen’

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Susan Pattison - founder of SP Therapy Services

Having set up in private practice 22 years ago, SP Therapy Services has watched a burgeoning sector grow around it. Here, founder Susan Pattison shares her views on its progress, and why community rehab has an ever-increasing role to play.

“We’re no longer a child who is complaining without a strong voice – we’ve grown up into the teenager who can articulate themselves.”

Susan Pattison’s analogy of the specialist neuro sector is an interesting one.

From setting up in business in the very early days of development for private practice 22 years ago, she has watched a thriving industry grow up around her.

“When I first set up in business, it was said many times I was like gold dust,” she recalls.

“Setting up on your own wasn’t common at all, particularly as a neurophysiotherapist. At that time, physio was about sprained ankles, not complex brain injury cases.

“When I was in my previous job, I was discharging people home to nothing, which is why I wanted to set up in business. I never set out to be a business woman, I just wanted to do right by my patients.

“I still remember my husband and family shaking their heads and saying I had six months to make a go of it, it was not widely done at all. It was a risk.”

As a trailblazer for private practitioners, Susan has gone on to build a thriving neurological physiotherapy and occupational therapy business, SP Therapy Services.

From its base in Bury, its nine-strong team covers Cheshire, Lancashire, Greater Manchester, South and West Yorkshire, supporting patients in both clinical and home settings.

“Now, it feels like my business is just a little goldfish in a huge pond, it’s a long way from the early days but these are actually really exciting times,” says Susan.

“We have grown up as a community and are making a lot of noise in the right ways. We have UKABIF banging on Parliament’s doors, helping to make neurorehab a hot topic, we’ve got BABICM setting standards for brain injury case managers, we’ve got Headway with their list of solicitors – and everyone is working together to move forward.

“I think the private sector has now come up and is a beacon of light for the NHS, we respond to the need and are there in support.

“A huge amount has changed over the past 22 years, and it is still changing. We have to continue to change, to work hard and progress together.”

And that need for ongoing change is something Susan feels passionately about – particularly the need for investment in community rehab, to support the work of the NHS post-discharge.

“If we are going to invest in saving a life, then we need to ensure a quality of life for that person. These people need rehab to have that,” she says.

“We can’t keep front-ending and need to invest in the longer-term care once they are discharged into the community. Rehabilitation has to happen in people’s communities as that’s where they live their lives.

“But investment in community rehab can’t be seen as a luxury, or something that is nice to have. It’s absolutely critical to people and families being allowed to rebuild their lives.

“With the impact of the pandemic, hospital waiting lists are going through the roof, and that is going to be pushed out into the community.

“But with such a strong private sector now, which has grown from the child into the teenager, as I put it, the support is there, it’s in place. And we’ll keep being that beacon for community rehab, continuing to call for the investment is needs.”

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