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Tom's Story

After being diagnosed with diabetes complications in 2016, Tom shares his experiences of Hospice care throughout the COVID pandemic. Having worked in the middle east for much of his career, retirement brought a return to England and an anticipated time for relaxation, but instead, time was to be taken up with hospital visits and medical appointments. After a few years of appointments and managing his symptoms, Tom was referred to the Hospice.

Tom, sitting on his sofa at home

“In January 2020 a complex care nurse told me about the support that I could get from the Hospice and made a referral for me. I was at home, but struggling with my symptoms and the complications from my diabetes which impacted my kidneys. Little did I know that a Lockdown was coming, or how the year of 2020 would turn out.

I found I was struggling with my breathing. Breathlessness is a difficult thing to live with, it makes day to day tasks tiring and difficult, and the feeling of not being able to breathe can be quite scary, especially overnight. It makes it hard to do the things you enjoy, and it never really goes away – it is a constant reminder of your illness. Over time, it is exhausting.

I had heard of the Hospice before I was referred as my wife and I have supported the Christmas Market and we’d also purchased knitted chicks at Easter, but I was totally unaware of the full range of services that are available and how much they could help me.

Tom in his Zoom Physio sessions at home

I joined the Hospice breathlessness group and my first appointment was at the beginning of February 2020. The nurse and doctor that I saw were very helpful and with the breathing exercises they gave me, things improved a bit – I started to manage my breathlessness and things got slightly easier. The doctor also suggested it would be good for me to have one to one Physiotherapy with the Hospice team, which I started once a week. This too was beneficial and also enjoyable, giving me something to look forward to and to do with my time. I started attending Hospice Day Service which again, I knew nothing about. I attended on a Wednesday morning and joined in the body percussion group, had a hand massage and also a Reiki session. It was something I was starting to enjoy, then COVID struck! and everything came to a halt as we all needed to go into lockdown.

The Hospice have been fantastic at keeping in touch whilst I have been at home. The physio team got in touch early in the lockdown and asked if I would like to do a weekly exercise session via a Zoom video call – I jumped at the chance and I am still doing this at the same time every Wednesday morning and really look forward to it. It has made a huge difference to how well I feel, day-to-day.

Throughout 2020 I had further hospital stays, the last one being in September which was another long stay. Unfortunately, my kidneys were unable to cope anymore, and I had to start dialysis three times per week. This was obviously a very upsetting time, but I was so grateful for my Hospice Zoom physio sessions, giving me a distraction that also helped me to feel better. My weekly sessions had built up my strength and muscles and I was in a much better shape when I was in hospital and upon discharge.

With COVID restrictions and shielding, life has been difficult at times. My week consists of dialysis on Tuesday, Thursday and Saturday mornings and my Zoom physio on Wednesdays. For a big chunk of my life, I worked and my job took up most of my time, so I do not really have any hobbies. I do like to follow quiz shows on the tv and look forward to a nice sunny day when I can sit out in the garden, giving me a bit of structure and something to look forward to. Even though we’ve been living through numerous lockdowns, it has been nice that my son has been working from home, so we’ve seen him more and he’s been on hand to give me and my wife support and someone different to talk to as well.

I always look forward to my session with the Hospice on a Wednesday morning and am looking forward to the world getting back to normal and coming into the Hospice again.

Since I was first introduced to the Hospice and throughout the pandemic, I have had regular phone calls from the team checking on my health and general well-being. This gives me the reassurance that they are there for me and my family should we need them – my wife and I take huge peace of mind from this and it greatly eases our worries.

As I said before, I did not realize the full extent of all the work that Hospice in the Weald does and I would have been truly lost without the help and ongoing care that I’ve received, particularly during this last year of abnormality. The Hospice is a lovely calming place and the nurses and staff are great, I really am looking forward to visiting again when the time comes.

I’d like to say thank you to everyone who supports the Hospice. They help me and so many other patients, each and every day.”