Vasculitis UK

Kicking Vasculitis and cancer into touch

I would like to request some ideas from the group.

I think my positive thoughts went on holiday for a while but that holiday is over and now it's challenge time.

I am desperate to be part of the working community again but with my up to date C V. it could be a struggle to find anyone to take me on. C.V. Negatives; I get a lot of sudden onset of pain ,chest arms legs. Neuropathy in both feet. Insulin dependant due to the wonder drug Steriods. COPD having to use oxygen, overweight, and nausea and now cancer the hormone drug is playing me up. Need the use of a wheelchair. Was stopped from driving. The worst problem is I am totally unreliable due to not knowing when the pain will attack.

Now the positive I love being round people and I am sure I still have skills that could be made use of. I have tried voluntary organisations, one was at a hospital stating I could be a floater if there was a shortage for example at reception they could give me a ring if all was dell I could go in but rejected ( I do understand why) but I just thought them to have a floater could be helpful

Is there any other ways do you have experience of to be 71yrs determined not to be a bookend at the end of the settee just reading, watching t.v.

I do try to do some telephone support but I am desperate to get out to meet people.

I have joined U3A and we have a sewing group they come to my house to meet, I have shown them where the tea and coffee plus the biscuits are and if I am not up to the mark someone will get on and do the refreshments.

Well I am sure you must be thinking my goodness don't we have enough challenges and maybe the answer is yes but then I am giving the decisions of my life to the pain I have who I refer to as my gremlin and my cancer pain as Percy short for perseverance and they are just not going to win.

So how about it what can I do with your support to kick them into touch.

3 Replies

Hi hospitals usually have a manager of volunteers - and they do all kinds of jobs from feeding patients to guiding people arount the site - it would be worth getting in touch with them. They also have patient experience leads who set up various patient groups to give advice to staff on what they are doing from a patient perspective. At the hospital I work at there is a patient group that will read patient information to make suggestions and a wayfinding group who ate helping us improve signage - and there will be many other opportunities. There is also the chance to become a foundation trust member and you just sign up fir free, get newsletters sent to you and invites to talks about health issues. Also GP practices usually have patient groups that meet regularly and discuss improvements to their services and systems. Those are just a few ideas - hope they help. The nhs is generally really keen to get patients involved in what they are doing. You could talk to the PALs service to get the right contacts at your hospital best of luck and I hope you find what you're looking for.


How about WRVS at your local hospital? Ours has a shop which also serves teas, coffees, etc., and someone on the reception desk to provide a friendly welcome and point folk in the right direction for various departments. The counter is low to be friendly to folk coming in in wheelchairs so would work the other way round, if you see what I mean.


Hi, I help out in the local primary school and take children for reading or help them with their craft work, I absolutely love it and the children are so much fun. When I went into hospital they sent me a big card which they all signed and flowers. Just another idea to consider.


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