Living Well Service patients give their feedback creatively

• 26 January 2024

Patients who visit our Living Well Service fed back to us about a part of the service that they find particularly helpful or useful.

Clinical Nurse Specialist, Katie Williams, came up with a unique way of allowing patients to express this creatively, on individual 10 x 10cm square canvases, for a project titled ‘The Value of Living Well to Me’.

Katie explained:

“Often when patients feedback to us verbally, what they say is hugely positive and unique to them. I was considering how we can capture this in a different way, other than written feedback. A way that would record feedback with expression and individuality. I wanted there to be a uniform approach, rather than completely individual, so used 10 x 10 canvases, as part of a whole picture. A patient liked the idea so much he donated the money to provide the canvases for the project.

I like to draw and paint but am aware some find this very daunting, and patients often say to me ‘I’m not creative’. As a result of that, and to be inclusive of all, I suggested they could write something – as a poem, use a symbol or create a collage from magazine pictures or a photo – anything that is pertinent to them.

This also enables people with neurological conditions, or who are unable to physically move their hands very much to be able to create something. It’s inclusive to anyone who’s coming to Living Well and very much about the value of the service to them and being an individual.”

Piers

Piers, who attends the Living Well Service talked about his canvas:

“I always sit there and say ‘the green-eyed monster’ because at first you don’t know what’s going on with you. Then you start to realise, [learning from the course]. A bit like being a kid again. So, you know, there’s the green-eyed monster underneath when you’re always scared to put your feet down but, you know, coming to this place, you don’t mind. You put your feet down because you understand the problems.

It’s all a part of your mental wellbeing because basically, if your mind’s not there, your body’s not there. If your body’s tired, your mind’s tired. It’s all a big build-up.

If your body’s tired and your mind’s fit, that’s basically because you’ve done too much with your body, where if your mind’s tired and your body’s fit, you’ve done too much with your mind. So, it’s all about that balance, trying to correspond with one or the other, and that’s the reason why I was like yeah, it’s a mental eye-opener.

This is the best thing about this place, just because you haven’t got the same condition as another patient, they can give you life hacks and where you can sit there and learn off them and they can learn off you. So you just take bits out of different situations and then it’s so much easier to process.

What helps me might not help someone else but it’s all about taking them little jigsaw bits and putting them into perspective for you. That’s the reason why I like coming to Living Well because it’s taught me so much, it’s unbelievable.”

Jack

Jack, who attends the Living Well Service, shared the meaning behind his canvas:

“That’s the Hospice with the doors open as a welcoming face. At the Living Well Service it is absolutely brilliant. I like the people -we can support each other and laugh together. You can get help here too – they have helped me with practical things – like putting the bills in my wife’s name so she can access the accounts when I am not here. This gives me peace of mind.

I do art as a hobby. It is really good therapy for me. I have painted portraits of people’s dogs. Instead of paying me they donated to Arthur Rank Hospice Charity.

There are no positives in dying when you don’t want to die but there are positives in knowing you are going to die. It has changed my outlook, you notice the things you are grateful for. I have a Wife, two children and five Grandchildren. Other than that nothing matters. One of my Grandson’s got married recently and I was pleased I could attend – even though I got Covid!

There is nothing more important than being with my family.”

Ron

Ron, who attends the Living Well Service Sessions shared his canvas:

“The thinking behind this was that the two birds are talking to each other and giving each other comfort and support – which is what we’re all about here: talking, listening, and you can get help.

Before I came, I’d heard a lot about the Hospice: all good. So, I was very happy to come here – and it is good. You know, I look forward to it. It’s such a nice way of spending half a day. It’s just relaxing and takes your cares away, because I suffer a lot with anxiety, and I find it helps here.

They’re such lovely people here. It’s where Jack [another patient] and I met. We can laugh together. We’ve both got similar problems so we just laugh about them and understand each other, you know.”

Ray

Ray also attends the Living Well Service and chatted about his canvas:

“Since I’ve had Motor Neurone Disease (MND), I’ve had to teach myself to slow down and to conserve my energy and rely on other people.

So, that was the idea behind the wording on the canvas. I used to love painting watercolour, but I’ve found it physically harder to do recently. So I’ve been painting, mostly animals, in little squares for greetings cards. My canvas is of of a sloth – because it’s slow – like I am now.”

I’ve always been very active and was still working until just after my diagnosis. Before I became ill, my idea of chilling out was to do something active. So, I’ve had to force myself to slow down and take it easy. It’s easy enough to do I think, as long as you live in the moment.

My wife and I were talking on the way here today. She said “What do you want to do for your birthday? Would you like to visit somewhere we used to go?” I used to walk a lot but I’m happy not going out now. I try different things and try being in the moment, making sure I’m doing what I want to and what I’m able to do. I try not to dwell too much on the past – if  you dwell too much on the past, you’ll just spiral down.

 I think when you are very active and busy, you talk to people, and you communicate with people but not for very long. When you’re diagnosed with something that’s life limiting and come to somewhere like Arthur Rank Hospice Charity, you can sit around and talk to people, that you’ve never met before and you can listen to their stories and share you’re own, which I find very supportive and interesting.

The other good thing we’ve found is being able to talk about the future. It feels like it would be scary to talk about dying but it isn’t. It set our mind at rest to be able to plan how the end might look and what I want and don’t want to happen. It’s very reassuring to know that my wishes will be taken into account. We were able to talk about it calmly because we didn’t wait until I was in crisis. It was good to talk all this through with Niki [my wife]. I know now I can go forward without trepidation.”

I’m very fond of the people I’ve met here at Living Well. Coming here gives me quite a warm feeling, I think. So, I’d recommend it to anybody and in fact we have recommended it to people in similar positions to me”.

Elizabeth (Lizzie)

Lizzie has been coming to the Living Well Service at the Hospice on and off since the Autumn. She was referred by her GP to the Charity after being diagnosed, in January 2023, with Ovarian Cancer. Lizzie told us more about her experience:

“My doctor mentioned Arthur Rank Hospice Charity and I said ‘Where is that?’ I then got a letter from Arthur Rank and so got a taxi and came here. I didn’t have an idea of what to expect. I was always a supporter of Marie-Curie and you get letters about it and it’s all terribly sad and I thought it was going to be something like that. But I had to come as she [my doctor] said ‘Give it a try’ and I never stopped. It’s wonderful really.

I was very nervous the first day but I’m so lucky to have found you. I love the nurses and the carers and everybody and the people here you can chat to.”

Lizzie decided to write on her canvas. She explained it took her a while to put it altogether and wrote:

“The Living Well Team at the Hospice have given me passionate care and support helping managing my symptoms and encouragement to continue living independently, which is great comfort to be able to call on such a dedicated and caring team, thank you.”

George

George, aged 72 years old, has had Parkinson’s Disease for 31 years. George remembers that earlier in his diagnosis he made a speech on behalf of the Parkinson’s Society. He explained:

“The condition is hard at times – it’s harder as the weeks and years go on, it’s a slow process.” 

The condition effects his memory, the use of his hands and balance so he has been coming the Living Well Service for friendship and support. George shared how people at the Living Well Service are supported:

“By having the opportunity to meet and share with others going through a similar situation.”

With the help of a volunteer, George was able to contribute to the Canvas project. He wanted it to represent change and he talked about what change means to him. When he was asked if he likes change he quickly replied:

“No, I’m a stalwart. There are few things in life we are certain of and that’s death and taxes.”

Lily 

Lily attends the Living Well Sessions and she, and her husband, Arthur, have been together 44 years. They have two daughters and two granddaughters. They shared what the service means to them, Lily said:

“Coming to the Living Well Service keeps me going, if I can’t come I get upset. It gives me confidence and the people around really care, you are not just left to get on with your own devices.”

“The only time I wouldn’t show up here is if I have an infection. Everyone is so friendly. You forget what’s wrong with you here – it just goes. You get chatting to everyone and you feel normal again – I feel me again.”

Arthur added:
“It is brilliant, it is nice to see her happy. It’s nice to have other conversations too.”

Their canvas is of a photo of Brooklyn Bridge in New York. Lily explained:

“We walked across that bridge. It’s a celebration of a time when we could.”

Katie added:

“A lot of thought’s gone into what they’ve all put and why they’ve done it. Some people are very much acknowledging they can’t necessarily write or draw what it is that they want to but they can still do something.

One of the patients, who also attends the Men’s Shed, said it would be hard to get a frame to put them all in and so he took a large bought frame to their group to adapt it for us.  He ended up creating a bespoke frame to display all 16 canvas’s in and he even painted it up beautifully.

We are very pleased with the results and held a special unveiling session on Friday 9 February where some of the patients, who took part, were able to attend.

The canvases are now proudly displayed on the wall in the Living Well Service room at the Hospice for everyone to see.”

You can read more about our patients on on personal stories pages: arhc.org.uk/personalstories

---

Our ‘Outstanding’ services are provided free of charge to patients and their families. Our aim being to provide the highest quality care, helping people to make every moment count. You can find out more about how we are funded here: arhc.org.uk/how-we-are-funded.