A sense of hope – Rachel’s story

Friday 19th of July 2019

While ‘life-limiting’ illness must be recognised  and planned for, this medical diagnosis can have a greater impact on day-to-day life than the condition itself. Staff at Hope House have wide experience of supporting people with health vulnerabilities, and say that connection and rapport are as influential as medicine in people’s life prospects…

Rachel in the garden with Nettie

“It’s absolutely important to recognise someone has a life-limiting illness in support plans, but equally important that they are never defined by this ‘diagnosis’. It’s a very powerful description that can easily encourage restrictive thinking and create restricted lives,” explains Service Manager Tracy Butler.

“Remaining person-centred is the challenge, focusing on life today – the here and now, rather than when things might end. None of us are really in control of that, and all our lives are limited.

“It’s very easy to wrap people up in cotton wool – but this isn’t the way you would want to live if your time here was to be cut short. While we always need to take care, our aim is to keep people doing the things they love –  and keep the music playing.

“We know from experience that this way of relating to people with these diagnoses can have an incredible impact on their health. “

Rachel is supported at Hope House and loves the natural sensory world and the elements – one of her favourite activities is to go for a wind-swept drive with her dad in his convertible. “When Rachel goes outside, her head lifts like a flower to face the sunshine”, says Senior Support worker Nettie Edgington.

However due to her multiple health conditions, Rachel is vulnerable to respiratory problems, and was taken into hospital in 2017 with a serious chest infection. Consultants concluded that she was an ‘end of life’ case and that nothing more could be done, sending her home to Hope House for palliative care.

Nettie explains – “When she was at the hospital we could see she was completely disconnecting – all her spirit was fading away and it was heartbreaking. While she needed the medical treatment it’s the just worst environment for her as a person.   She was on 100% oxygen when we got back, but we could tell how much she hated the mask and the way it dug into her skin. We got permission from the hospital to try reducing the use, and after two weeks she was entirely off it. The right support and the involvement of her family meant she made a full recovery, which you would never has believed possible from what was being discussed at the hospital.

“This shows how that human connection we have is central to people’s health prospects. Through working with Rachel so much she is able to really communicate to us what she is feeling and thinking, which means we can advocate for her powerfully and effectively. She’s an incredible woman and we were so happy to have our flower back.”

Rachel’s dad Mark said: “We know that the reason she survived her pneumonia, and continues to be well, is that she is living somewhere that she feels valued and loved.  This gives her the will to keep going – she knows she has a life worth living.

“Rachel’s disability means she has heightened perception of what is going on around her, and this extends to the people who are supporting her, and their attitude and mood. The support she gets with Avenues is fantastic – she’s treated like an equal and can sense the people supporting her want to be there and are connected with her.

“Of course the team have a professional job to do, but there is a real feeling of ‘family’ within the service, and that extends to us as parents when we visit. The great thing is we often have to make an appointment to visit just because she’s out and about so much. And then when we leave we have peace of mind that our daughter is safe, happy and enjoying life.”