NHS hospitals are often ableist in design and are not appropriate for people living with a wide-range of conditions and diseases. Obviously, Stripy Lightbulb CIC works for the benefit of M.E/C.F.S patients and so this blog will concentrate on M.E./C.F.S but similar energy-impaired diseases and conditions will have identical or their own unique requirements that are currently not catered for.
There may not be any effective treatments or cures for Myalgic Encephalomyelitis also sometimes known as Chronic Fatigue Syndrome (M.E/C.F.S.), but people living with M.E/C.F.S find themselves on hospital estates for a variety of reasons including appointments for tests for M.E/C.F.S-related symptoms, tests/treatments for other illnesses, or in their role as a parent/guardian/partner of a hospital patient. M.E/C.F.S patients need to be considered when making decisions on hospital design/refurbishments.
What do I mean by that and why does it matter?
Hospitals are often ableist in design and are not appropriate for people living with a wide-range of conditions and diseases. Obviously, Stripy Lightbulb CIC works for the benefit of M.E/C.F.S patients and so this blog will concentrate on M.E./C.F.S, but similar diseases and conditions will have identical or their own unique requirements that are currently not catered for. This ableism is often flagged by people living with M.E/C.F.S on social media but is often met with eye-rolls and ‘it’s awful isn’t it? But that’s just how it is’ from others in the community. Why? Why can’t we collectively (People living with M.E/C.F.S and the NHS) work to change this?
This Dragon’s Den-style initiative was recently shared on social media by the Portsmouth Hospitals University NHS Trust (Stripy Lightbulb CIC is based in Portsmouth) and I started to think how to use the opportunity to create change for those living with M.E./C.F.S (and similar diseases/conditions) to make their hospital experience more bearable.
As a local resident, I have had to attend Queen Alexandra Hospital in Portsmouth too many times to mention, both as a patient and support/driver for family members. I have a lived experience of this vast super-hospital and know the huge impact walking around this estate has on my energy-impaired and light sensitive body. As with all hospitals, it is complete sensory overload that can wipe me out for days afterwards, there are also no quiet or dimly lit spaces for visitors, outpatients, or inpatients to simply recline and rest (I do not mean sit and have a conversation).
This lack of appropriate spaces means that –
- People living with M.E/C.F.S may need to cancel appointments because they know that appointments would be too exhausting/overloading and will cause a bad crash (without having anywhere to rest properly)
- Being exhausted/crashed means ‘mild’ patients may not be safe to drive home following a hospital appointment.
- Appointments are not as productive as they could be because people living with M.E/C.F.S may not be able to communicate their ill health/reason for the appointment properly, due to exhaustion/overload.
These are just some of the reasons why NHS estates need to be more inclusive of people living with M.E/C.F.S patients.
With this in mind, I had an idea to submit an application to this ‘Dragon’s Den’ initiative a few months ago. The application wasn’t clear about whether non-NHS staff could apply so I contacted my friend/NHS connection Sharon, who works as a NHS researcher in QA Hospital, to see if she wanted to collaborate on the application. Sharon had worked on the Long COVID Collaborative Group I was part of in 2020/21 and so she has a full understanding of the types of issues faced within NHS hospitals by people living with energy-impaired illnesses.
The idea (summary)
The next stage
Yesterday, Sharon and I met online with the Kate, ‘Head of Charity’ within Portsmouth Hospitals University NHS Trust to answer further questions about our application. Kate and others within the Dragon’s Den team can completely understand the need for this quiet space and say it ticks all of the requirement boxes of the initiative but they do not have an available space within the vast hospital estate. However, this is a ‘rolling’ initiative and it will be ‘kept in mind’. I’m feeling positive about this idea and initiative, the seed has been planted.
There are benefits for the NHS in implementing this idea, I hate highlighting the economic impact of our disease, but cancelled/missed appointments cost the NHS money. This room would also be available to staff with these energy-impaired conditions (too many NHS staff now have Long COVID but have NOWHERE to adequately rest if they are able to remain in employment). Clinical lighting is exhausting, working in a vast hospital setting is exhausting and overwhelms senses. This quiet room may help to keep some NHS staff in employment.
NHS- wide issue
I have shared this initiative and idea with my connections in Wales through my work on the Cardiff and Vale Long Term Conditions Group that I have been part of for nearly two years. This lack of quiet/restful spaces is evident on most, if not all, NHS hospital estates and so I have no doubt that it is also an issue in Wales. They do not have a ‘Dragon’s Den-style’ initiative but do have other means to implement this type of idea. This is something I hope to work towards within Stripy Lightbulb CIC’s work in Wales.
As I explained to Kate on the online video call yesterday, half of Long COVID cases meet M.E/C.F.S diagnostic criteria at the one year point (after acute onset). This will benefit a lot of people within the scope of the NHS Trust.
More work in progress.