Here at the ILC we see so many clients with various medical conditions and different areas of need that no two appointments are ever the same. To showcase some of the many ways our service has helped people, we would like to share some stories below. These stories are written by real clients in their own words, and are posted with their consent. We really appreciate the time our visitors have taken to write us such detailed narratives.
I heard about the ILC from my Occupational Therapist at the Mineral Water Hospital ‘Min’ (RNHRD, Bath), and have been in touch on and off over the past few years.
Most recently (August, 2019), I got back in touch to get advice about being assessed for an NHS self-propelled wheelchair. I have a wide range of health conditions that vary in intensity and which impact my ability to function on a daily basis. I struggle with my mobility due to chronic pain and fatigue caused by fibromyalgia, chronic back pain, severe degenerative spinal disc disease and osteoarthritis. I currently use walking sticks and a mobility scooter, because I find walking and standing painful and fatiguing. However, my needs are changing, and I want to remain as active and independent as possible. Using a self-propelled wheelchair will enable me to remain physically active and access areas where I can’t use the mobility scooter.
Christine Bott, Senior OT, has been fantastic! I often feel at times like I am a fraud, or have imposter syndrome, in that I have hidden disabilities that are not obvious to people. I am not a paraplegic, or an amputee, so I struggle to come to terms with needing mobility aids, and I worry about what other people may think of me. Christine has been very reassuring on this point and non-judgemental, I feel validated by her as a very experienced healthcare professional.
Christine assessed me for a self-propelled wheelchair and sent the forms off to the NHS Wheelchair Service for their approval. She showed me what an NHS wheelchair is like, and also brought in an independent provider to allow me the opportunity to try out a range of prescription self-propelled wheelchairs that are lighter weight for more active users.
The advantages of coming to the ILC is that I was given plenty of time to ask questions, be assessed and try out equipment. There was no pressure to purchase equipment. I was given the pros and cons of different options e.g. NHS wheelchair or paying privately for lighter weight one.
I have gained more knowledge about the world of wheelchairs! I never knew how vast and complex they are and there all sorts of things to consider such as, weight, being measured in a chair to get the fit right, adjustable back supports, cambered wheels etc, and that’s before colour! So my advice learning from previous experience, is that buying off the peg without being properly assessed can lead to problems. It’s worth the time and effort to get it right, just like buying a new car.
Mum and I visited the ILC to seek help with eating and drinking aids because mum’s hand dexterity has been reducing. She did not feel confident picking up a mug and drinking from it and often spilling her drink, which upsets her. Also, mum had difficulty using cutlery, and often just used a spoon, which limited the range of food available for her meals. I found I was just not bothering to give her certain foods. We had found the best possible crockery and cutlery we had at home, but felt there could be better options.
We visited Christine at the ILC, who spent time with us suggesting different types of plates, cups and cutlery, and mum could try them to see what works best for us. Christine gave me the names of the chosen items and where to buy them.
The items were generally available in local mobility retail shops and on the internet, so I was able to order them and have them delivered within days.
The mug was an instant success! The plate took a few days to get used to, mainly to figure out where to position the dish lip, and the cutlery took a bit longer for mum to get used to holding. But all 3 items have made a great difference, and successfully reduced the number of spills. Thank you.
I visited the ILC during one of their open days as I thought it would be a nice day out for my 90-year old dad (they had entertainment and refreshments as well as tours) and give me a chance to think about some of the things I might need for my future too. We had a lovely time – we both enjoyed the assistance dog demonstration, especially watching him take clothes out of the washing machine, and dad won a family ticket to the Larmer Tree Gardens in the raffle.
When it came to the tour of the centre, we joined a small group and the Occupational Therapist showed us around the building and gave a detailed talk about what happens during appointments, with plenty of examples of how different the pieces of equipment are, and how there are no “one size fits all” options.
I had been especially looking forward to seeing the walk-in bath, as I’d had my heart set on one of these as a “treat” for myself as I got older. I’m so glad I was able to see it demonstrated by the Occupational Therapist though before I’d actually wasted my money on buying one, as much to my surprise I found that it wouldn’t have been suitable for me at all. I’d completely neglected to think about the fact that you can’t open the door while you’re in the bath, so you have to sit inside and wait for it to fill up, and then stay seated getting cold as you wait for the water to drain away afterwards! I don’t know what would happen if there was an emergency and I needed to get out while it was full…
Since my visit I’ve “treated myself” to a lovely walk-in shower instead, and I definitely made the right decision. There’s always the option to add a chair which pulls down from the wall in the future as well, but hopefully I won’t need that for many years yet.
If I hadn’t come to the open day then I probably wouldn’t have considered making an appointment to look at the walk-in baths, as it didn’t even cross my mind that they wouldn’t be suitable. The visit was therefore a really valuable experience for me, and the ILC is now the first place I’d contact for any similar advice, even if I didn’t think I needed it!
I had appealed against the decision to stop my Personal Independence Payment and a different organisation were going to represent me at the Tribunal.
I met the representative from the other organisation beforehand at the library and I explained everything about my PIP appeal and that I had suicidal thoughts, sensitivity to noise and really wanted to leave the library. The rep agreed to come with me to the appeal hearing.
But after that he didn’t answer messages that I had left on his phone. I thought he might be at the hearing but he wasn’t and hadn’t let me know.
The hearing was adjourned so I could find another representative. I contacted the ILC and Sheila wrote a submission and supported me through the hearing. The hearing was successful and my PIP was reinstated at the same rate as before. I am dyslexic and need people to read and write things for me. I couldn’t have managed this on my own.
More stories to follow…