Dr Child's Casebook: The Big Soak – Disability Funds

Increasingly perceived as a luxury, baths remain a necessity for many. While showers may have the moral high ground in an environmental context, and the expedient upper hand in our fast-paced lives, a bathtub is unparalleled in the comfort it offers aching bones. Yet they are surprisingly elusive, as one of our supporters discovered. Living in social housing with a walk-in shower, the supporter’s request for a bath – the only respite from her terrible pain – was rebuffed by her council. She turned to Dr Child for advice.

Q. I am 30 years old with Marfan syndrome. I have always suffered with joint pain, painful dislocations and all-round chronic pain. In 2005 at the age of 15, I had an operation on my kneecap to stop it dislocating, then in 2014 I had a triple foot fusion. Sadly, that operation has failed and my foot is now even worse to the point I can barely walk, the metal work inside my foot causes me immense pain especially when cold (and can't warm up, one of many more problems caused by Marfan), and in 2017 I underwent a valve sparing aortic root replacement surgery. 

I currently live in a ground floor flat, designed for disabled people. All is well, however I'm having great difficulty in regards to bathing. We currently have a walk-in shower, with a disabled seat and railings. This is great, however, and this is where I really need your help! My condition seems to deteriorate further year by year. The only relief I get from the pain is if I am able to soak my bones, joints and muscles in a bath tub. On numerous occasions I have had to go upstairs to use my neighbour’s bath, again, great, but I can't always get up there the majority of the time due to my chronic pain. I feel like I have no quality of life and on occasions have felt somewhat suicidal because of the pain I have to deal with day in, day out. It is exhausting. 

I have contacted Occupational Therapy and they have pretty much told me there is nothing they can do for me- they said because I want a bath tub and not a shower room, they can't do anything. Most people want a shower room, and they would happily help with that, but I want the opposite, they don't want to know and suggested I contacted the Marfan Trust for advice. Is there anything you could do to help me? Any advice would be very much appreciated. Thank you so much 

A. Pain is so debilitating. I hope you are taking medicine specific for joints and muscles and would recommend Brufen 400 mgs twice a day with Omeprazole 10 mg once a day to protect your stomach from irritation- always taken with or after food. Please ask your doctor to prescribe this. Are you taking a blood thinner like warfarin after your aorta operation? You can still take Brufen regularly and drop your warfarin dose down, since both these medicines thin the blood. You will have to work with the anticoagulation clinic to achieve the correct dose.

Unfortunately we do not have sufficient funds at the Marfan Trust to help everyone purchase aids. I asked our advisor, Marian Mason what suggestions she had, and I attach her helpful reply. If you send me your postal address I will send you our pamphlet about the muscles and bones, and you can share that with your doctor. It would also be helpful if you could be referred to a rheumatologist (joint specialist).

Here is the advice from our advisor at the former Marfan Association:

Try local Rotary or Lions Club as they often have funds to help local people in need and often do. A Go Fund Me Page or Crowd Fund may be worth trying. I am surprised the council are not helpful, as they do have funds to help people install ramps, stair lifts etc. Maybe you have to push a bit more. Would a letter from your doctor help? Perhaps write to your MP? There is a firm called Dolphin bathing who make walk in baths. Ring 0800 0443 656 for a brochure. Might be helpful if you have trouble getting in and out. Then you would have a model and a price for purchase and installation to ask for. Go for it! Also if your doctor referred you to an orthotic in the NHS you could have inner soles and shoes made to support your feet. Let us know how you get on.

Meanwhile here is list of charities to whom Marfan people can apply for a disability aids such as a bath tub:

- Barchester’s Charitable Foundation helps older people and other adults with a disability across England, Scotland and Wales. It gives grants to help reduce isolation and loneliness, promote group activities and generally improve people's independence, mobility and quality of life. Grants range from £100 to £5,000. This needs to be filled out by a third party. If your doctor has the relevant information, they can complete this for you.

- Florence Nightingale Aid in Sickness Trust Grants to individuals of any age who are ill or disabled to pay for medical items/services that improve quality of life such as convalescent care and disability equipment.

- Independence at Home Grants to people living with a long-term illness or disability, to help with the cost of adaptations, equipment or other useful items for the home directly related to the disability, for which public funds are not available.

- League of the Helping Hand Grants and regular financial support to people experiencing financial hardship due to illness or disability, or as a result of being a carer, to pay for essential household items such as domestic appliances and specialist equipment. 

- Margaret’s Fund Grants for women experiencing ill health who are in financial need to pay for disability equipment, convalescent holidays, clothing, food or extra heating.

Dr Child's Casebook: The Big Soak – Disability Funds
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