The Royal Free Charity’s support hub offers many services to help patients living with long-term conditions, including support with work and welfare issues. The service aims to help people to navigate complex situations during difficult times.
Welfare rights advice
The team of welfare advisers supports patients with an array of issues including finances - assessing individual benefit entitlement, helping with applications, and helping people with appeals – and debt support, referring people to specialised charities and organisations to get specialist debt advice and guidance.
Housing support
The support hub’s welfare advisors advocate to local authorities on behalf of patients with housing issues, helping to secure appropriate housing, supporting those who are homeless or at risk of homelessness - and in many cases preventing that from happening.
Check in and chat
At the start of the pandemic, many patients found themselves more isolated than usual. The support hub set up ‘check-in and chats’, delivered by a team of volunteers ready to give people a call and have a chat. These calls can be once or twice a week, or monthly, dependent on the pairing and the patient’s needs – and can range from a quick five-minute call to a 45-minute chat.
Peer support groups
The support hub assists several peer support groups. They include Eye Matter, a support group for people learning to live with sight loss, and an amputee support group for patients who have experienced the loss of a limb. The groups provide a safe and supportive environment to connect with others who have overcome similar challenges.
General information and signposting
The support hub team also signposts to many other services in the community, locally and nationwide, dependent on the patient’s or carer’s specific needs.
Published by the Royal Free Charity, Pears Building, Pond Street, London NW3 2PP
Charity number 1165672
Company limited by guarantee number 09987907
www.royalfreecharity.org
info@royalfreecharity.org 020 7472 6677
◄ Kris and Rozalia, who completed specialist scar tissue therapy training to enhance the complementary therapy team’s clinical massage services
New service introduced to aid scar tissue recovery
The Royal Free Charity’s complementary therapists have become the first charityprovided therapy team in the UK to offer scar tissue therapy to NHS outpatients.
Therapists Rozalia and Kris completed specialised training in scar tissue therapy during the summer and are working with the Royal Free Hospital’s oncology department to identify patients who might benefit from the treatment.
Rozalia said: "Scar tissue therapy offers a new way for us to be holistic with our services. We often used to avoid these areas during a massage but now we have the professional level skills to help patients in a new way."
Scar tissue massage therapy has several benefits including:
• increasing circulation in the affected area
• reducing itching, pain, and numbness
• softening the appearance of scars
• increasing the range of movement.
The therapy can also have a positive effect on a patient’s mental health and recovery.
Scars can be treated from four weeks after surgery. Although the service is primarily for patients who have had a mastectomy, it can benefit patients undergoing a range of other surgical procedures from hand surgery, hip replacements, caesarean sections and many more.
The first patients to benefit from scar tissue therapy
The first patients to benefit from the scar tissue therapy have noticed considerable improvements.
Patient A was referred to the team for treatment for a large scar in the palm of their hand which was affecting their manual dexterity. Before treatment they found it hard to open their hand fully and found simple things like holding a pen or opening a bottle difficult.
After only four treatments, the patient has noticed a significant improvement: “My scar has softened and feels more hydrated. I can open my hand fully and have better grip and movement.“
The team received a referral for Patient B who had various scars on their right leg. Before
treatment, the scars were tight and pulled on the ankle and knee area. The patient suffered with numbness. They found it particularly difficult to take part in activities with their young family, such as football, running and cycling. They also found it emotionally challenging coming to terms with their scars.
They’ve had three treatments so far. After the first session, they said this was the first time since their accident that their leg felt normal. They now have sensation back in the leg. By the end of the third treatment, they have been able to take part in all their usual activities and feel much happier with their scar. “I don’t know what you did but this is incredible. Do you have magic in your fingers?”
The Royal Free Hospital was at the forefront of the UK’s response to the emergence of HIV and AIDS. The Ian Charleson Day Centre (ICDC) opened in 1990, the first open-access clinic in the UK to provide specialist care for patients. Today, the centre provides integrated care, including mental health support, to help people to live well with HIV. As the centre celebrates over 30 years of excellent care, we look at how the Royal Free Charity plays an integral role in supporting its patients.
Volunteers
Charlotte Harkin, volunteer gardener, has been maintaining the centre’s gardens for the past eight years: “I’ve been volunteering for many years in a variety of roles, but it is particularly special to be maintaining the gardens here. In the 80s, I had many friends who died of AIDS, friends who I used to go to clubs with; we were told they moved back
home but found out later they had died. So, it’s special to me to be able to volunteer here.”
Jean Prentice also volunteers at the centre, helping with admin tasks: “I have done other volunteering roles, but I always come back to here because I enjoy it the most. I feel like a member of the team as all the staff know me. Plus, folding letters is actually my favourite job in the world as your mind can be anywhere while your hands are busy folding!”
Jorge Ferreira, nurse practitioner, said: “I’ve worked in the ICDC for 10 years and I have good days and other days that are very challenging. Then every Tuesday Jean comes along with her lovely smile, dedication, and contagious beautiful presence that touches my heart and reminds me of the core of nursing. I can’t imagine a Tuesday without Jean. Jean, with her pink hair, radiant smile and hard work is very very much appreciated by all of us.”
Support hub
The charity’s support hub provides advice and information for patients with a long-term health condition. At its heart is a team of welfare advisers who support patients with an array of issues including benefit applications and housing issues.
Dr Tristan Barber, consultant in HIV medicine, says that this support is invaluable to both patients and staff: “Patients with HIV can face many challenges including poverty, frailty, complex co-morbidity, isolation, loneliness and issues with a changing benefits landscape. It takes a lot of pressure from our staff knowing that some of our most complex patients have this excellent patient-centred, holistic support.”
Clinical massage
The charity’s complementary therapy team provides clinical massage services to ICDC patients. Massage therapy can provide emotional and physical support to patients especially after receiving a life-changing diagnosis. The centre was one of the first patient clinics to restart complementary therapy that had been paused at the onset of the pandemic.
Tom Fernandez, nurse practitioner, has been impressed with the incredible impact this has had on patients: “It's been nice to see patients travelling in specially to see Kris, one of the team’s massage therapists, and to come for follow-ups too. She has a great rapport with the patients and the team.”
Professor Fiona Burns, HIV clinical lead, sums it up:
What the charity provides in terms of a welcoming face to give directions, maintaining our gardens and creating a more friendly ambience is so important.
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Amyloidosis is a rare, often fatal disease, caused by the accumulation of protein fibres, amyloid, in the body. The National Amyloidosis Centre is based at the Royal Free Hospital. Supported by the Royal Free Charity, it is the only specialist centre in the UK for amyloidosis treatment and research. Featured here are two families whose experiences with amyloidosis motivated them to raise funds for research into the condition.
Four cousins cycled a total of 75 miles around the stunning Vale of Belvoir in Nottinghamshire in memory of their grandmother Mary who died in 2015.
Mary fell ill in January 2015. She was diagnosed with amyloidosis and started treatment at the Royal Free Hospital in July but died four weeks later.
To mark the date of Mary’s 75th birthday, cousins Jake, Ben, Charlie and Maya cycled
a combined total of 75 miles, raising £250 for amyloidosis research.
Mary’s daughter, Helen Darby-Dowman, said: “My sister and I had done some fundraising before for the National Amyloidosis Centre, but we wanted to do something with the children. Mum was a keen cyclist and as a kid, we did a lot of bike rides. It would have been Mum’s 75th birthday this year and so we decided to get together as a family and ride 75 miles.
“The day was really special as my dad came and we could share it all as a family. It was lovely to see the kids enjoying it and they had a real sense of achievement as they hadn’t done much cycling before. My mum always said: ‘You can do anything if you put your mind to it’, but there were lots of sore bottoms!”
Glynis Ainsworth, an avid gardener, raised over £1,000 for amyloidosis research when she opened her garden to the public this summer.
Glynis took part in Scotland's Gardens Scheme which helps garden owners across Scotland who want to invite the public to view their gardens while raising money for charity. She was motivated to raise money when a friend, Mark, was diagnosed with amyloidosis. Glynis explained: "My daughter Sarah and I have known Mark and his family for many years. Knowing him, his attitude to life, his ambitions, the thoughtfulness he has for other people - particularly with regard to others who have amyloidosis and whom he has supported throughout his own illnessinspired us to put forward the idea of supporting the research.
"Sarah and I have both had an interest in our garden for many years and when COVID came, it was a place where we could both spend more time. Our garden has evolved over the years. It's never planned, we just keep finding other "corners" where we can try out new ideas."
Glynis’s garden was one of six in her village to open on the same
day: "Our home is in Milton of Campsie, a smallish village, but like all villages it is growing. It sits at the foot of the Campsie Hills, which sometimes, especially in the autumn setting sun, can look like Uluru (Ayers Rock) in Australia. This means a lot to us as we lived in Australia and New Zealand for many years before coming to Scotland. This connection inspired me to buy a Tasmanian Tree Fern last year for our garden. My youngest daughter was born in Tasmania and it’s nice to have a bit of "Tassie" in our garden."
Funding from the Royal Free Charity has resulted in a package of mental health and wellbeing support for the Royal Free London’s 10,000 staff. It ranges from psychological support with qualified therapists to peer support in the form a mental health first aid programme. Mental health first aid in work teaches people how to identify, understand and respond to colleagues who may be experiencing a mental health issue. It is an initial response to distress in the workplace. Carol Menashy, mental health first aider, has led the roll-out of the programme at the trust.
Last year, we supported more than 500 colleagues. We work on a peer
support level. We listen with compassion and empathy and without judgement. People open up to us about mental health struggles and we can signpost them for support to the most appropriate professional rank or service.
Having the charity’s funding has made that crucial difference. It gives us that time to reach those people who wouldn't necessarily find our service otherwise. It's an outreach service.
We’ve been building this community of mental health first aiders who are very committed people, and bringing them together. People come to us about lots of different things. It’s a workplace support scheme but we’re here irrespective of whether staff are experiencing distress at work or at home. And what we find is that everything is related:
if you’re unhappy at home, that’s going to impact on your work and the other way round.
We've had a lot of people who've sadly been bereaved, and we've been giving support by signposting to chaplaincy and counsellors through the trust’s occupational health psychology team. We’ve supported quite a few staff who've opened up about domestic abuse; they felt at this trust that they could come to us and we've been able to support them and keep them safe. Retirement and pensions are another issue we see; people come to us because they are approaching retirement and they’re stressed about their pension.
Bereavements, emotional health, physical health, bullying – people come to us about all of those things. Not everyone is referred on; often people just want to talk and offload and once they've done that, they're actually okay. We give them the space to do that.
Space to talk
Thanks to the charity’s funding, there are rooms dedicated to staff wellbeing, known as wobble rooms. The wobble rooms are there for people to use independently or they can use them to receive support. And that could be from anyone providing mental health support, including the first aiders or the chaplaincy. Before we had them, it was very difficult to find an appropriate space and that's very disconcerting. Now, if someone is very distressed in the moment, we know where we can take them. We have a space that's there for us to use.
A visible presence
I'm a theatre nurse, so prior to having this funding, I would be doing this in my time on the side, which was very difficult. The funding from the charity allows me to focus. It is wonderful to have the time to actually say: “Yeah, I'll talk to you next Wednesday”, because as a scrub nurse, I could never say that.
We do weekly wellbeing walkabouts. With the clothes I wear, people can recognise me easily. On Mondays I go to the Royal Free Hospital. We're at Chase Farm Hospital and Barnet Hospital on Wednesdays.
We are not only looking at the clinical sites. My colleague Maria covers the civic centre in Enfield where admin staff are based and also the decontamination service team.
We've got training lined up and I'm hoping to get somebody on board to cover Edgware, so that all sites will have access to a mental health first aider and know who they can contact if they're struggling. It’s making mental health support accessible across the trust sites. The charity has really amazed me, actually. I didn't realise or appreciate just how much they did and it's just been wonderful.
Despite its name, the Royal Free Hospital Children's School provides support far beyond Hampstead’s Pond Street. Spread across four sites and the hospital’s wards, it provides education for children who are unable to access regular schooling due to their physical or mental health needs.
At the Royal Free Hospital, the school provides regular classroom-based lessons for children and young people staying on the wards, liaising with their home schools to ensure their education is affected as little as possible by their stay. Teachers also provide pastoral support to patients and their parents and carers.
The other sites offer:
• classes for patients of the child and adolescent mental health services who are receiving treatment for eating disorders
• outreach teaching for young people experiencing anxiety and emotionallybased school avoidance
• a GCSE day school for years 10 and 11, known as the Hive.
How the charity helps
The school service, rated excellent by Ofsted, is supported by 12 Royal Free Charity volunteers. They help students during lessons, especially where volunteers have a particular understanding of a subject. They help to run art activities and provide emotional support through pet therapy.
Shiva, a volunteer who helps with maths lessons, says of her therapy dog Rolo: "I feel Rolo is an ice breaker between myself and the young adults. I also find the presence of Rolo when I work with students one on one makes them focus more intently on the subject matter.
"For me it’s a privilege to work with the young students and help them with furthering their knowledge of maths and ultimately their education."
Alex Yates, the headteacher, said: “The therapy dogs play a really important role in re-engagement: they are soothing, encourage empathy and can help some young people develop social skills. The staff greatly enjoy their presence as well.”
Kathy, a volunteer, supports older students who are working towards their GCSEs or other qualifications, ready to go on to further education or work. She said: “There is a very warm, vibrant and empathetic feel about the school. It is a pleasure to be part of. If a student needs 'time out' there is always a member of staff to talk to.”
Diabetes initiative
Funding from the charity has allowed the school to provide extra support for children learning to live with diabetes, through providing special equipment and books.
It is important that carers of children diagnosed with type 1 diabetes can accurately measure and count carbohydrates. Studies found that young people who have a high percentage of blood sugars at two weeks post diagnosis are more likely to have this picture at two years.
The charity provided a £1,915 grant for 40 packs of weighing scales, measuring cups and copies of Carbs and Cals, a book with a visual guide to carbohydrate and calorie counting. These were given to patients at diagnosis and teaching sessions were provided to help children and families learn to use the equipment.
Steve Green, the assistant headteacher of the school, recently completed the London to Brighton bike ride to raise money for the charity.
Steve said: “There’s nothing better than taking part in a cycling sportive with 20,000 other cyclists, through stunning countryside, all encouraging each other until the end,
with the added benefit of raising money for such worthy causes. It was a brilliant day, and I am truly grateful for the amazing generosity of our supporters who managed to raise over £4,000 for our cause.”
Staff at the Royal Free Hospital’s paediatric department have a new green haven for breaks and fresh air, thanks to generous donations of both money and plants. The refurbishment of the outside space was funded by a £10,000 donation from the Hollick Family Foundation. The whole department was involved in designing and setting up the garden area, which provides a central table and seating and an array of plants which were donated to the hospital by the RHS Chelsea Flower Show.
Jon Spiers, chief executive of the Royal Free Charity, said: “We were delighted when the Hollick Family Foundation generously donated £10,000 to support our paediatric team at the Royal Free London. Thanks to the foundation’s wonderful support, we have been able to transform a forgotten outside space into a calm, beautiful oasis. This is being used by staff to rest, recuperate and connect with colleagues in the open air.”
Dr Victoria Dublon, paediatric consultant, said: “In these times of wearing masks, it's been so nice to have somewhere outside to take your mask off and get some air, and have a cup of tea. It encompasses real garden joy at work.”
