Kay’s story

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Kay lives with Multiple Sclerosis (MS) and has been attending the Living Well service at Arthur Rank Hospice since 2019, after being referred by her MS Nurse  to receive support with her condition. Her Mum was also cared for on the Inpatient Unit, in early 2021.

Kay was first diagnosed with MS in 2010.

“I’ve had MS since 2010 but they said I had the onset from the late 90s. I was working at a tannery and I had put my symptoms down to the fact I was doing heavy lifting at my job. The last thing I thought about was having any condition.

I finished working there and then things continued happening until 2010 and then I had a lumbar puncture which led me to being diagnosed with MS. They said ‘Sorry you have MS and there is no cure for it’.

I was referred to Arthur Rank Hospice in February 2019 to help me learn how to cope with it as I was struggling at that point.

It was a shock to be referred to start with.

“When the MS Nurse said to me at first, I am going to put a referral in for you to go to Arthur Rank Hospice, I looked at her and said: ‘Is there something you need to tell me?’. My Mum and some of my friends have passed away there, when you hear the word hospice you automatically think end of life.

When I first came here before the pandemic began, I was very nervous, but I was made to feel welcome as soon as I walked in the doors. I was given a cup of tea and told what happens during Living Well sessions. You could chat with everyone as the session started and then everybody would go off to do different things.”

Making a real difference.

“Coming here and making friends and how the staff are, has meant a lot.

I’ve had good experiences at other places and bad experiences. For me it is a lot about how you are treated: that’s what really makes a difference. I call the staff here angels because to me they are like angels. The kindness that is shown and the way they care for us makes me feel at ease. I get nervous a lot and it really does make a difference coming here.

I’ve got to experience all the different things they do. I’ve had massages, music and art Therapy and I’ve done sessions in the gym too. Even during the pandemic, I had weekly calls from a Caring Communities volunteer, who was like a phone friend.

I then joined the Zoom sessions and – even though it’s not the same as coming in – it would have been harder during this time if I hadn’t had those Zoom meetings and that connection. I have even taken up growing plants and vegetables in my garden this year to keep me busy!

The relaxion sessions here are also really good. For somebody who gets anxiety, I find that it’s really helpful. The music therapy sessions with Keith are also good because you can choose a song that is special to you or holds a memory. You sort of think ‘Oh yeah, I’d forgotten about that memory or song from my childhood’.”.

A way to stay social.

“You get to meet other people who have a long-term condition. You have friends and you can talk to them.

If someone doesn’t have a condition, it can be hard for them to relate to you but everyone being supported in the Living Well Service has something they are living with, so it’s nice to share our experiences.

There’s no judgement. Other patients can talk to you about things, and you can do the same, you can understand how other people cope with things and then try their ideas out yourself.”

As well as supporting Kay, the Hospice’s Inpatient Unit cared for her Mum in February 2021. She had been diagnosed with Alzheimer’s ten years before and before coming to the Hospice had been looked after by Addenbrookes and a care home.

“My Mum used to be a nurse and when she was in a care home, she kept going up to other residents and trying to care for them. They had to keep giving her other jobs to do to keep her busy!

When Mum was in the Hospice, I was able to visit her in the Inpatient Unit and was so thankful that her last days were here. What I liked was that they held Mum’s hand when they were explaining things to her. She was in her snoopy pyjamas and the nurses remembered her for that.“

Special memories.

“One day the Nurse was giving Mum a lollipop, and Mum was watching her and telling us how to give her it and it was so comical. She was not letting the nurse have the lollipop and even though Mum was coming to the end of her days, she still had that cheeky side of her! One of the other days when we saw her, Mum decided she was going to have a sick bowl as a hat which was so funny and memories we won’t forget.”