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Community rehab

How two community services are making tentative steps to normality

As pandemic restrictions lift, brain injury services are starting to come back out of hibernation. Jessica Brown speaks to two Headway groups across the country to see how they’re resuming support offline.

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In Portsmouth, the local Headway has had a difficult time in recent months. Two service users have died from Covid-19, and another has been sectioned and taken to a secure facility after their mental health took a downturn.

There’s been a huge spike in mental health problems, and a few service users, who wouldn’t have done so under normal circumstances, have got in trouble with the police.

Most service users are gradually building their contact with the outside world again, with Headway’s help.

When lockdown began in March, service manager Deborah Robinson decided the best course of action was to identify the most vulnerable users and make sure she and her team maintained regular contact with them. The next challenge was gradually exposing them to more contact as restrictions began to ease.

“We regard it as a graduation – first is phone contact, then sitting in the garden with them, then inviting them on a walk once they’ve got confident enough to come out of their homes with us, then eventually we’ll suggest they come to a session with the group,” she says.

“Some people are too frail or anxious, so they won’t come out,” she says, “So we’ll have to carry on popping in to see them.”

This approach has proven particularly helpful in some ways, Robinson says. Before the virus, staff members hoped service users would speak up in sessions when they had a problem, but visiting people at home has allowed staff and volunteers to pick up on issues faster and get to know them better.

“One staff member met a service user in his garden, and noticed that the recycling bin was overflowing with alcohol. We knew he’d been a drinker in the past, so the staff member talked to him about his drinking, teasing information out,” Robinson says.

“He said he was drinking a lot, so we’ve been able to put in place goals to help him cut down on his drinking and put him in touch with AA, as well as various other things to help with a problem that reared its head in lockdown.”

Employees and volunteers, she adds, are also getting better at texting group members and touching base.

“It’s a mix of phoning people regularly and picking up the ones where there are issues. We’re getting more adept at that because it wasn’t something we did, and we’ve also picked up almost everyone’s carers because we’ve been talking to them to hear their concerns, too.”

Forty miles west in Salisbury, Headway arranged Zoom groups every week, but recognised that this option wasn’t suited to everyone.

“We were conscious to get actual face-to-face contact again, so as the guidelines have changed, we’ve thought about how we can work with that,” says Sarah Allen, service manager.

In recent weeks, online groups have continued, but staff members have started arranging small group meet-ups in various locations, including the outdoor café at Salisbury Museum, which Allen says provided a good learning opportunity.

One of Robinson’s major concerns in Portsmouth is how service users will react when they see other people not wearing masks or standing too close, and are told they have to adhere to guidelines themselves.

Allen, however, hopes meeting up in public places will help service users slowly accustom to these new ways of life.

“Some people coming to the groups haven’t been outside during the pandemic because all their activities have stopped, so it’s really important to model social distancing and hygiene behaviours,” Allen says.

“Somewhere like an outdoor café has been really useful because it’s about giving group members social contact in a setting where they can see people all around them modelling social distancing, staff wearing face masks and putting on hand sanitiser,” she says. “Then, when group members do go out and about more, it’ll be more familiar for them.”

In recent weeks, groups in Salisbury have also met up in a park, where they were able to socially distance.

Allen says coming out of lockdown and resuming services has been a learning curve for her, and she is realising that it’s sometimes more beneficial to have smaller groups than the maximum allowed by government guidelines. 

She knows she will have to continue to adapt in unknown ways as government guidelines change.

But the future remains uncertain. Headway Salisbury doesn’t have its own centre, so rents community rooms to host sessions instead – and none have reopened yet. Allen plans on continuing outdoor activities for as long as possible, but is uncertain of what will happen as temperatures cool.

“Going into autumn and winter poses a new challenge,” she says. “I’m not sure how we’re going to meet if the government guidelines if the maximum number of people who can meet indoors stays the same,” she says.

Meanwhile in Portsmouth, premises have been locked up for the duration of lockdown. Robinson has seen an increase in demand for services, so as things resume back to pre-Covid 19, she says here’s a lot of thinking to be done about how the service is going to expand to accommodate increased need. She anticipates the service will need to expand by a third.

Both Portsmouth and Salisbury Headway services adapted quickly when the lockdown came in March. Adapting back to how things were before looks like it will be a longer, more difficult path – but while Allen and Robinson have faced slightly different challenges over the last few months, there’s no doubt they’ve both found silver linings in the challenges thrown at them so far.

Brain injury

Sir Michael Palin supports The Brain Charity appeal

The much-loved acting and comedy legend donated his time due to his personal experience of the trauma of neurological conditions

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A charity which supports people with neurological conditions has won the support of Sir Michael Palin in making a national fundraising appeal. 

The Brain Charity is the focus of a BBC Lifeline appeal, which shows its work to a national audience by telling the stories of three people who have benefitted from its support. 

Acting and comedy legend Sir Michael donated his time to present The Brain Charity’s appeal from his personal experience of the impact of neurological conditions – his wife was diagnosed with a benign brain tumour more than 25 years ago, and he saw his Monty Python colleague Terry Jones face the effects of dementia before his death last year.

He said: “Neurological conditions have the potential to wreak havoc on the lives of those they affect; something my family and I can relate to.

“My wife was diagnosed with a benign brain tumour more than 25 years ago, and it was a worrying and frightening time for our family.

“That’s why the important work of The Brain Charity is a cause very close to my heart.

“I am delighted to support them by presenting their Lifeline appeal, and hope the film encourages many much-needed donations for such a worthwhile cause.”

Over the past month, the BBC Lifeline crew has travelled across the UK to see first-hand how The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives by providing practical advice, emotional support and creative activities.

They filmed with mum-of-three Lindsey, from Dunbar, Scotland, who was diagnosed with secondary progressive MS in her brain in October 2020.

The 60-year-old former deputy headteacher went from being a highly paid, hard-working professional to wondering how her family was going to cope.

She found the practical advice she received from The Brain Charity’s information and advice officer Janet ‘life-changing’ and said this reminded her that there was still a future for her post-diagnosis.

The eight-minute film also features Rachel, 46, from Cheshire, who spent two weeks in a coma and had to learn to walk and talk again after experiencing a brain haemorrhage.

After an operation to remove the tangle of blood vessels which had cause the haemorrhage, Rachel began to make a physical recovery, but struggled mentally.

She found it difficult to leave the house due to low confidence around her speech, which had been affected, and experiencing debilitating night terrors that she was back in intensive care.

In May 2020, she was offered six weeks of free counselling from The Brain Charity – which she said was a lifeline. She has since decided to give back by becoming a volunteer phone befriender.

Finally, the feature will focus on 18-year-old Sammee, who has Autism Spectrum Disorder (ASD) and recently moved to Liverpool from London.

The Brain Charity’s Brain Changer Arts Project sessions – which combine neuro-physiotherapy and dance – have helped him gain confidence, express himself creatively and make new friends.

The Lifeline appeal will be available to watch on BBC iPlayer here

All funds raised from the Lifeline appeal will go towards The Brain Charity’s Sixmas appeal, which is raising £60,000 for urgent mental health support for the one in six people left out in the cold to deal with their neurological condition alone this Christmas. 

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Brain injury

Breathe Care creating ‘new generation’ of ABI support

The provider is creating an initial two new independent living developments, with more planned

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A care provider is creating a new generation of independent living accommodation to maximise the recovery potential and future opportunities of people living with acquired brain injuries (ABI). 

Breathe Care is set to open two new developments in the coming months – comprising a total of 17 one and two-bedroom apartments – to help bring new and much-needed choice in ABI provision. 

Both developments, in Wellingborough, will have an integrated multi-disciplinary team (MDT) on site around the clock, which clinicians specialising in neurotrauma and ABI rehabilitation. 

St Heliers in Wellingborough site

And plans are already underway for Breathe Care to expand its accommodation and care provision further across the country. Kettering has been identified as the next location, with hopes to bring 14 apartments to the town by the end of 2022, followed by a move into adjoining counties.

Breathe Care has shaped its ABI model based on the expertise of its leadership team, bringing together years of experience spanning brain injury rehabilitation and care, commercial development, supported living and architecture and design. 

Its chief clinical director, Amanda Swain, has over 30 years of experience of developing, establishing and reinventing ABI and neurological care services.

Its new developments – flagship project, St Heliers, and Edwards Chambers – build on its experience of operating independent living apartments in specialist mental health care across Northamptonshire for over a decade.  

“We did a lot of research into what the current offering for long term living with slow stream rehabilitation in ABI looks like in this area and realised that we could make a really big difference,” says Stephen Crouch, founder and chief executive of Breathe Care. 

“A lot of the client group is aged between 20 and 30, but the choice is often living in an HMO or care home with older people. Independent living apartments, done at a high standard, can bring huge benefits to this group in particular. Our projects are very specialist and answer an exact need. 

“Not only are they beautiful apartments, but they can help to reduce anxiety and anger through   clients having their own space and privacy, while having the support there 24/7 as and when they need it.”

The combination of living space designed for the exact requirements of its residents, coupled with a specialist MDT on site that includes specially-trained support staff, is already helping Breathe Care and its model to stand out from the competition, says Stephen. 

“Because our team is there around the clock, and the clinicians or Amanda are there, we are creating a new level of support. We can introduce new or better processes for these people as soon as they are needed, which will lead to better outcomes,” he says. 

While the focus is on getting everything ready for a January launch for St Heliers, Breathe Care is also turning its attention to future plans and replicating its model elsewhere in the country. 

“For now, the main thing is getting the care team established at Wellingborough. This style of independent living accommodation is badly needed,” says Stephen. 

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Brain injury

How the power of football is increasing brain injury support

The partnership between Liverpool County FA and The Brain Charity is helping to raise both awareness and funds for survivors

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A new partnership is harnessing the power of football to help increase support for people living with brain injuries and other neurological conditions. 

Liverpool County FA is working alongside The Brain Charity to raise both funds and awareness around the impact brain illness or injury can have on individuals and families. It is also supporting the frontline work of the charity in delivering support across Merseyside and, increasingly, the wider UK. 

The two-year partnership is building on the love of football to help engage people, and hopes it can particularly target men, who can be a hard to reach group who are reluctant to seek support. 

In another strand of the initiative, Liverpool County FA will work alongside its new charity partner to help grassroots football clubs and leagues to be more dementia-friendly, and learn how to recognise early warning signs and offer support. 

It will also help to raise awareness of the growing links between football and neurodegenerative illness – building further on the work of the FA nationally with its guidance around high-force heading in training to help grassroots players understand the risks. 

Daniel Green, CEO of Liverpool County FA, says the partnership will offer support to brain injury survivors in a host of ways. 

“We hope it will be quite diverse. As well as the financial support we can hopefully give to The Brain Charity, we are looking at areas which could potentially include employment and volunteering and how we can work together, be it through support around education, coaching and CPD qualifications, for some of the their clients,” he says. 

“If we can use football to tackle some of the social isolation they may have been experiencing and rebuild their confidence, then then we believe we’ve got a real role to play locally. 

“Football can cater for all demographics, male and female, young and old, but we know the male population can be particularly hard to reach. Football is still quite a male dominated game, and while this goes more broadly than just neurological issues, men don’t tend to talk very openly, or will maybe be more flippant, in talking about what troubles them. 

“The Brain Charity have identified a real target audience that they want to work with, and to potentially use the power of football to get to those individuals to feel more comfortable talking about and identifying what those issues may be.” 

Another key aspect of the partnership focuses on the high-profile issue of dementia in football, with Liverpool County FA working with The Brain Charity to raise awareness of the signs and impact of the illness. 

“There is the wider issue and ongoing work around dementia linked to football, and back in July the FA issued their updated guidance for amateur and youth football, both male and female. So this is something we are raising awareness of, and how to spot those early signs of dementia too,” says Daniel. 

“This could be among people who have had a career in football, or they may not have done, but it’s about how we can all work together to spot those symptoms, and identify the actions that friends, family and people’s wider networks can take to support people from recognising the signs through to managing the symptoms. 

“And also, one of the big challenges The Brain Charity have identified is, it’s one thing that clients receive the medical support and advice that they need, but it’s another thing to look at their own physical wellbeing alongside that.

“We’re keen to use the facilities at our disposal to link the two elements. So an individual may receive some counselling through The Brain Charity, and we’ll then help facilitate a walking football session, or something of that nature, so that they’re getting not only the medical advice that they need, but also that physical wellbeing piece for them. 

“We can provide that safe environment whereby they can talk openly, to try and find that normality again for them and rebuild that confidence. We’re also keen to work with our local clubs to see how we can work together to reintegrate people back into a football environment, but in a manner that is sensitive to some of the challenges they may face – but that’s in its early stages.”

Nanette Mellor, CEO of The Brain Charity, said: “We can’t wait to get to work delivering a programme of physical activities, awareness campaigns, fundraising appeals and volunteering opportunities in partnership with their staff and wider grassroots network.

“Liverpool County FA’s key value of ‘Football for All’ matches our own wholehearted commitment to fighting for an inclusive society.

“We are excited to improve the health and wellbeing of people with neurological conditions across Merseyside, with their support.”

Daniel adds: “Through discussions very early on with The Brain Charity there’s a lot that we need to try and get to grips of, but there’s also a lot of opportunities as well. 

“We hope that through the two-year partnership we will be able to put in place the service provision and structures so that when the two years come to an end, the work will be able to continue, so we can continue to support people with neurological conditions for the long term.”

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