Disabled People’s Rights – have your say!
The Welsh Government has launched a consultation on its Draft Disabled People’s Rights plan, setting out “a positive ambition for advancing the rights and opportunities of all disabled people across Wales over the next decade”.
Goal: lasting change addressing barriers to inclusion
The plan is based on the work of the Disability Rights Taskforce, which brought together people with lived experience and expertise. It aims to address the challenges faced by disabled people in their everyday lives and outlines both immediate actions and long-term outcomes to create lasting change in how society addresses barriers to inclusion.
Who can take part?
Individuals, community groups, businesses and organisations, with particular emphasis on hearing directly from disabled people about their priorities.
Is ME/CFS a disability?
ME/CFS is listed as a specific medical condition in the 2010 Equality Act in the UK. Everyone with ME/CFS is not automatically classified as having a disability. This will depend on the severity of your condition.
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. [Gov.uk]
What does the plan cover:
- embedding and understanding of the Social Model of Disability
- access to services
- independent living: social care
- independent living: health
- travel
- employment and income
- affordable and accessible housing
- children and young people
- access to justice
- wellbeing
Closing date
The consultation is open until 7 August 2025.
Take part in a variety of ways:
Read comments:
In Pembrokeshire I have read that support is going to be available for people with post viral illness, but not all of us with MECFS can pinpoint our illness starting with a virus, for some of us it seemed to start in forties with changes to hormones. I think this needs to be looked into more by research as after 13 years of chronic fatigue I don’t think my levels of hormones have been tested and a lot of women in midlife get cfs/me. I take hrt but women are only allowed a certain level of it; but it might not be optimal. A doctor has told me that women in midlife are dealing with a lot so she thinks this is reason for fatigue issues, but I get PEM, and can’t push on through the fatigue like I could when I was younger. I wonder how many womens issues with post exertional malaise started at the start of peri menopause. There needs to be more research testing womens hormone levels before peri menopause, as I still feel that my cfs/me is linked to peri menopause and maybe in men there are similar hormone issues for some with cfs/me. Obviously though there are those whose illness clearly started with a virus.
ME Research UK agrees that there needs to be more research into the relationship between hormones and ME/CFS. It is always difficult to say what has triggered ME in people. It could be a combination of factors but is often guesswork.
Hywel Dda’s Long COVID service has recently opened up to people with ME and a post viral trigger is not necessary. Currently a diagnosis of LC, ME, CFS or PVFS from a GP is required for entry, as the GP needs to have done to rule out other conditions. People can ask their GPs to be referred.
The problem for a lot of us is getting a diagnosis though. I am not confident that there is a doctor at my surgery who will treat my symptoms with understanding; as I have brought them up with 2 doctors and only fatigue has been written on my notes. I think the stigma and low self esteem from years of symptoms not being taken seriously has made me nervous about approaching doctors. There should maybe be a campaign with posters; but even after years of menopause in the press; I have never seen a poster or leaflet in a medical setting in wales referring to menopause so not sure they will take me/cfs seriously either. If there was some sort of system that enabled doctors to see which patients had complained of fatigue or PEM and not been diagnosed and were contacted that would be great; but the stigma and previous experience of doctors not seeming interested in my symptoms has effected my ability to ask for more help. It is good that patients now with ME are being referred to services though, but woukd be good to have a list of which surgeries in uk haven’t diagnosed any ME patients, as have read that is the case for almost 200 in the UK.
Referring to previous reply; I am aware wames is a volunteer organisation, so am grateful for any work carried out by wames increasing awareness. I didn’t make that clear in previous comment; that your organisation gives people hope. Also I apologise for lack of paragraphs making my previous comment harder to read; I wrote it at my most tiring time of day so should have possibly waited; so thank you for your patience in reading my long post.
Thanks for your comments. WAMES is talking to most of the Health Boards about service development.
The difficulty of getting a diagnosis is one we are acutely aware of and you will have seen that this has been highlighted by the discussions at the recent ME Voices Wales events and by the subsequent short questionnaire we are currently conducting. Some new avenues for discussions with the NHS are opening up so we will be bringing this up as often as we can. We will continue to gather people’s experiences to help with that
The LC/ME teams hope to have doctors on their teams and/or allow self-referral to courses. We will let people know more, when we know more. It helps to have your experience though. In fact any expereinces of gettig a diagnosis or accessing the rehab services would be veery helpful when we advocate. Jan