July is Disability Pride Month, and here at FTWW we truly believe that disability something to be ‘proud’ of – if you haven’t read our previous blog on this, we’d recommend doing so before you read this one!
Disability Pride Month is not just a celebration, it is also a protest, and this has been demonstrated across the UK over the last few months in resistance to UK Government’s Welfare Reform Proposals. We want to use this blog post to highlight some of the disabling barriers faced by those in our community – particularly when it comes to health – and the actions we are taking together with our community and health services to help improve things for ‘women’s health’ across Wales.
As a member disabled people’s organisation (DPO) of Disability Wales, we fed into their response to the UK Government’s welfare reform consultation – which itself highlighted the urgent need for co-production*; had disabled people been equal partners in the design of the reforms from the very beginning, the proposals very likely wouldn’t have been met with the distress and resistance expressed by so many across many sections of society. As long- standing advocates of co-production, we hope that the UK Government will learn from this and commit to true co-production in the future.
We are particularly concerned at the impact proposed changes to future eligibility for Personal Independence Payment (PIP) and the health element of Universal Credit may have on women and people registered female at birth (AFAB)**.
According to the Office for National Statistics (ONS), women are likely to experience fewer years ‘disability free’ than men, more likely to be living with a long-standing health problem, and more likely to be limited in activities as a result.
Many disabled women will rely on additional state support, such as PIP, to help cover the additional costs that come from being disabled; Scope’s latest findings show that “disabled households need an extra £1,095 each month. This is just to have the same standard of living as non-disabled households. As inflation is expected to rise over the next five years so too the extra costs of disability, reaching £1,224 per month by 2029 to 2030 financial year.”
Some of these additional costs may be in the form of therapeutic interventions (often not available on the NHS) to enable people to stay well enough to remain in employment. Many of our members are having to pay for counselling, supplements, physiotherapy, and devices like TENS machines privately, so we struggle to see how the proposed changes to eligibility can possibly serve as an incentive to work, when it is a benefit already doing precisely what it was intended to do: help women preserve their independence and, where possible, stay in or enter employment.
There is no doubt that women will be disproportionately impacted by proposed cuts to disability-related benefits, but they experience additional barriers when it comes to their healthcare too – which is why FTWW exists.
We recognise that arguably, the biggest disabling barrier in our community is a lack of awareness; with so many women living with long-term, often chronic and non-visible health issues, not recognising themselves in typical depictions of disability or knowing about associated rights under the Equality Act 2010, often means they are unable to access the advice and support to which they are entitled, ranging from reasonable adjustments in the workplace to social care services.
FTWW very much supports the social model of disability, which focuses on how societal barriers (such as inaccessible public transport, diagnostic delays and long NHS waiting lists, and inaccessible public buildings) ‘dis-able’ us, This differs to the medical model of disability, which tends to see a person as being disabled by their illness(es) or impairment(s) rather than historic and societal attitudes.
Of course, it is worth pointing out that, in addition to societal barriers, many chronically ill people are disabled by their health issues and symptoms, so may not feel included in the social model – something all of us at FTWW understand through our own lived experiences – so we aim to ensure that the experiences of those with chronic and / or long-term illnesses are included and heard within the social model movement.
Like many in our community, I feel like I am ‘collecting’ chronic health issues and impairments; some I was born with, one came after a head injury, and others have arrived later in life. Although my health very much disables me, I subscribe to the social model because many of my health issues were caused by long diagnostic delays, a lack of access to the specialist care I need, and health services simply not existing for some of my illnesses.
In addition to all the previously mentioned barriers, I have been further disabled by medical bias, where it was assumed that my ongoing symptoms ‘must be due to a STD’ (sexually transmitted disease) contracted as a result of not being straight and therefore promiscuous; inaccessibility in the health system; systemic bias which all-too-often sees gynaecological issues wrongly attributed to gender stereotypes and tropes (‘you’re a woman, ergo must be anxious / stressed’); discrimination (including in previous workplaces and health care settings where I was denied reasonable adjustments), and general negative attitudes towards disabled people and what we can and can’t do: in short, if health services had met my needs when I first started seeking care in 1999, and if societal barriers were removed, I likely wouldn’t be disabled to the degree I am now. My experience is replicated among women from across Wales.
I was recently asked why I don’t post very much about one of my health issues during its awareness month. There are a few reasons for this: I believe awareness, action, and advocacy should take place all year round; I don’t wish to retraumatise myself, and I had realised I would have to block out four entire months back-to-back for the awareness months of just some of my health issues, which simply isn’t sustainable when living with energy-limiting conditions and trying to hold down a part-time job, enjoy hobbies, and simply ‘live’! But the biggest reason is because many of the barriers we face in our healthcare are not exclusive to one health issue.
The third sector Women’s Health Wales Coalition’s report, co-produced and published on International Day of Action for Women’s Health back in 2022, highlighted four key themes that adversely impact female health:
- Lack of access to specialist services
- The need for improved data collection
- Support for sustainable co-production
- Improved training for health and care professionals
The Coalition successfully influenced the Welsh Government to commit to a ten-year NHS Wales Women’s Health Plan, work on which is now underway. As Coalition Chair, FTWW works with the Government and NHS Wales to ensure that co-production is at the heart of the design and delivery of the plan.
But it doesn’t end there. As a patient-led charity, we were delighted to publish ‘Our Right to Health and Wellbeing in Wales’, our 2026-2030 Manifesto, which was fully co-produced with our members in May of this year.
The manifesto sets out current issues facing female healthcare in Wales and our calls to the next Welsh Government on how to address them, highlighting six ways to realise women’s right to health and wellbeing in Wales:
- Ongoing investment in research into health issues and conditions affecting women and people registered female at birth
- Menstrual health, gynaecological conditions, and menopause as priorities for investment and quality improvement in primary care in Wales
- Reducing NHS Wales waiting lists
- Training and investment in specialist nurses and allied healthcare professionals for ‘women’s health’ conditions in primary and secondary care
- Embedding women’s health leadership and co-production with patients and third sector in every Health Board in Wales
- A co-produced NHS Wales Patient Charter
If the next Welsh Government can implement these proposals, with co-production at their heart, we are certain that many women’s experiences of being disabled by health services can become a thing of the past.
When we consider that a whopping 77% of the NHS workforce in Wales is female, it is clear that improved health services don’t just benefit patients, but our valued NHS staff too. It is only by working together as true partners that we can make things better for everyone.
As Disability Pride Month comes to an end, we would like to express our sincere thanks and pride in our community for their advocacy, support of each other, and drive to make things better for all. We also encourage others to join us and ensure that disability rights and improvements to healthcare are championed all year round.
If you would like to get involved with FTWW’s work, please do get in touch. If you are a patient, we invite you to join our Facebook group and / or get in touch with us about volunteering.
*Co-production: An equal partnership where people with lived (like patients) and learnt (like doctors and nurses) experience work together from start to finish.
**Reference in our name and on our website to ‘women’ should be considered inclusive of girls and people registered female at birth, including trans, non-binary, and intersex people – all of whom FTWW supports.
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