Question

I have moderate to severe ME which has been relatively stable for quite some time. I live in a house with a difficult flight of stairs – so my family and I have decided that it would be better for me to also use a downstairs room. This would make life a lot easier for everyone and, as the room overlooks the garden, it would help to brighten up my day! I also use a wheelchair occasionally when outdoors.

My question, which is partly an observation, is that when we have tried to obtain support from an occupational therapist (OT) regarding the use of aids, a blue badge and home adaptions, including the outdoor wheelchair, the response has always been quite negative. I’ve even been told that going down the route of obtaining, and then relying on aids and adaptions, is going to “hamper my mobilisation and recovery”.

Is this something that happens to other people? And is there anything I can do?

Answer

You are clearly in a difficult position here if an NHS OT is expressing an opinion that the use of a specific aid or adaptation would hamper your recovery.

Unfortunately, some of my medical colleagues still adhere to this inaccurate and inflexible position. This is largely a result of believing that the cause of ME/CFS is psychological – in other words, providing aids and adaptations will just help to reinforce abnormal/unhelpful illness beliefs and behaviours.

However, there are two very useful statements that you could use to support your case.

First is a very helpful section on Equipment and Practical Assistance (4:3:3) that I helped to prepare in the 2002 Chief Medical Officer's report on ME/CFS. Among the points made here are:

Wheelchairs and other mobility aids can be particularly useful for some people affected by ME/CFS, to increase the physical range and mobility of disabled patients, enabling them to do or participate in more things, and see people who would otherwise be inaccessible. Experience suggests that provision of a wheelchair or other mobility aid does not stop patients working towards mobility without the equipment in the long term; indeed such aids probably assist remobilisation, with suitable supervision – e.g. from a physiotherapist.

Second is the section in the new (2021) NICE Guideline on ME/CFS covering aids and adaptations:

1.8: Enable prompt assessment for funding for home adaptation. If the person is not eligible for funding, continue to offer information and support in arranging home adaptations.

1.8.8 For people with moderate ME/CFS or severe or very severe ME/CFS, consider providing or recommending aids and adaptations (such as a wheelchair, blue badge or stairlift) that could help them maintain their independence and improve their quality of life, taking into account the risks and benefits. Include these in the person's care and support plan.

1.8.9 Provide aids and adaptations identified in the person's social care needs assessment without delay, so that people with ME/CFS can carry out activities of daily living and maintain their quality of life as much as possible.

This type of official information would clearly help to support your case and the OT may not even be aware of its existence.

I would also suggest that you try to obtain the support from your GP, or any health professional who knows you and is willing to state, quite clearly, that you are sufficiently disabled to require the use of disability aids, and that this would actually help your mobility and wellbeing. However, I appreciate that this may not be easy if you don't have a supportive GP.

Please let us know if you have had difficulty in obtaining disability aids and appliances due to a lack of support from health professionals.

More Information:

• Information: 2002 Chief Medical Officer’s Working Group Report on ME/CFS: https://meassociation.org.uk/coyv

• 2021 NICE guideline on ME/CFS: https://tinyurl.com/5n9a49ue

• MEA information leaflet on disability aids and appliances: https://meassociation.org.uk/0fgs