55-year old Amanda Hornsby, who has functional neurological disorder caused by encephalitis, first received support from Sue Ryder Thorpe Hall Hospice's Day Services in November 2019. She shares her story about the crucial support she’s now getting through the hospice's newly launched Virtual Day Services programme.
The mother of four and grandmother of five, who has functional neurological disorder caused by encephalitis, initially received support from Sue Ryder Thorpe Hall Hospice in November 2019 after the Social Prescribing Service at her Market Deeping GP surgery referred her to the hospice’s Day Services programme.
Following the referral, Amanda attended the Peterborough-based hospice one day a week.
“Attending day services at Sue Ryder Thorpe Hall Hospice completely changed my life,” said Amanda. “It was the first time in a long time I did not feel alone. I was surrounded by people who were comfortable in their own skin and people took me for who I am. I didn’t have to pretend.
“The team there gave me support at a time when I felt a drain to others. After being diagnosed with my life changing condition I went on an emotional roller coaster ride from different doctors’ consultations to cancelled appointments and from different waiting rooms to receiving endless letters. I felt like I had lost all my feelings of self-identity and worth, but the team at Sue Ryder changed all of that.
“They saw me for me. They saw me as a person. They treated me holistically and they cared for my emotions and my feelings. They gave me time and importantly they gave me a choice about what I wanted to do, which felt amazing.”
An holistic approach to care
“The holistic approach offered by the team there is so beneficial to health and wellbeing and it goes well beyond any pills and potions. Looking at the bigger picture, taking time to get to know the real person, enabling people to take ownership and effectively tackling their concerns and issues in really positive ways makes such a huge difference.
“The whole experience really lifted me up, and I really feel that it was down to their holistic approach.”
“The service helped my family and my carers too. I had been feeling so frustrated, but Sue Ryder helped me better vocalise what I was feeling and I could better explain my symptoms. I felt like I had ownership of my body again, and I was a person again – not a number. As a result I have been able to communicate more effectively and my care package has become more appropriate.”
Delivering care virtually
When the outbreak of the coronavirus pandemic in March 2020 suspended day sessions at the hospice, the hospice team worked to pivot the service, working with existing patients to develop and pilot a new programme to deliver care virtually in people’s own homes.
Amanda was part of the pilot before Christmas, helping to make sure that the new virtual service would best meet the needs of the hospice’s patients.
Amanda said: “No one ever expected the coronavirus pandemic to last this long, but here we are almost a year on. Multiple lockdowns, shielding and being isolated at home saw me spiralling back towards the way I felt following my diagnosis. I felt depressed, isolated and things were very difficult.”
“When the day services team from Sue Ryder Thorpe Hall got in touch to say what they were planning and asked me if I would be part of the pilot to help develop the new service, I grabbed the opportunity with both hands. I really wanted to take part as I was desperate for social interaction again – no matter that it was over Zoom!”
“It was great to see other members and the day services team once again. It was so reassuring to see them again and to see that everyone was doing ok.”
The first Zoom call
“That first Zoom call I did my hair, I did my make up, I picked out a nice scarf to wear. It was the first time in a long time I had done that. I got back to being me again. I had a reason to get up in the mornings.
“Not only am I benefiting from the virtual sessions, but my family and my carers are too. One of my favourite sessions is complementary therapy, led by the complementary therapist at the hospice. My carers are learning step by step how to give me reflexology and hand massages. We giggle as we do it, but it is so relaxing. My carers are being taught a new skill by an expert at Sue Ryder, and I am benefiting from it too.
“I am in a better place mentally again now. I am a better person to be around and I feel less of a burden as I see life more positively, meaning I am much easier to look after!”
The new virtual service launched fully in January, and Amanda now attends weekly Zoom sessions to help keep her safe and well at home. She’s sharing her story to encourage more people living in and around Peterborough with a neurological condition or dementia to find out more about the service, which is now open to new referrals.
“For anyone thinking of finding out more about the service, I say go for it,” Amanda said. “There are no negatives and people are so supportive. The team are so caring, have real empathy and they are so understanding of the situation you are in. The team at Sue Ryder really do bring out the best in you. They have changed my life and they can help you be the best possible version of you too.
“I really can’t praise the Sue Ryder Thorpe Hall day services team enough. They are lifting me back up again. I have lots of session to look forward to – arts and crafts, chair-based exercises and I am enjoying social interaction again, which was just not possible for me during lockdown.”
Amanda says the service is easy to set up and access. “I am not very PC-savvy but after having one of my children show me how to set up Zoom and access it I have no problems using it at all. It really is so simple. The hospice team email you a meeting invite, you open the email and click on the link on your laptop or device and away you go. That’s all you have to do.”
Keeping people safe and supported at home
Sue Ryder Thorpe Hall Hospice’s virtual day service programme helps people keep safe and supported at home, whilst reducing social isolation.
The virtual sessions, run by a team of experts at the hospice, help manage symptoms and improve wellbeing with weekly sessions include relaxation, meditation, complementary therapy, chair based exercise, advanced care planning, quizzes and discussion groups.
Patients are able to create a fully individualised programme of five one hour sessions per week over an eight week block at the weekly cost of £35, which patients can pay for from their personal care budget, which is allocated to them by their local council to support their eligible social care needs.
Currently the virtual day services programme supports people with neurological conditions or dementia living in and around Peterborough, but the team hope to expand the service wider to support more people as the programme grows.
Continuing to be there when it matters
Sue Ryder Nurse Jo Hazell heads up the team. She explains more: “We wanted to make sure we could continue to be there when it matters by creating a fully inclusive virtual service which best meet peoples’ needs. We’re thrilled the new service is up and running and open to new referrals.
“We’ll continue to be led by our members to develop the service. Once restrictions are eased and it is safe for us to do so, we hope to be able to organise more community-based activities which our members tell us they really value doing like swimming, sailing, trips out, pub lunches and gardening clubs. Our service will grow and change as the world around us and the needs of our members change, making sure we continue to best meet their needs.”