I have written a series of mini blogs to a number of organisations of which I am a member. These blogs open lines of communication with various groups as I struggle to attend their meetings. I have therefore had to be creative and hopefully these mini blogs will be effective enough to get my message out there and build an alliance of support behind me in my ongoing struggle with Wrexham CBC.  Below is the reproduction of my last mini blog to the Co-operative Party:

Hi to the chair and to the members of the NW Co-operative Party. Let me take this opportunity to introduce myself a little.

I am a full time wheelchair user and live with a progressive, genetic disease of the nervous system known as Friedreich’s Ataxia (FA). This debilitating disease only affects one in 50,000 people.  As a result, I do not find it easy to attend Co-op Party meetings, so I thought I’d send you an occasional update on my situation and related political issues. So here goes:

• The median age of death of a person with FA is 35, so at age 47 I might be living on borrowed time. As a result, I have a “bucket list” and I may seem to many to be in a hurry, or a little impatient. I stopped working as a journalist at about 24, as my condition worsened.

• As a disabled person, unable to work there is no such thing as a pension to live off; so, I am at the mercy of the state, for good or ill and the compassion of local authority staff. However, when an individual comes up against the state, the individual can seem to be a nuisance, so that he needs to be swotted away, unless he accepts what he is given gratefully. Accordingly, I do understand the passions aroused by the debate about the “winter fuel allowance”.

• I receive Direct Payments from Wrexham Council to pay for my social care; so that I employ 10 staff to provide me with round the clock care. However, this process isn’t neat and tidy as you might assume.

• Over £33,000 of Direct Payments have been subject to a clawback in 2023 and a further £3,277.70 is currently in the process of another clawback, as the council say I cannot spend the money on things I need to take care of myself, such as bibs, hand sanitiser and a “T bar” sleeping system. I have enlisted the help of both Lesley Griffiths, MS and Mark Isherwood, MS (Chair of the Senedd Cross Party Disability Group). I was delighted that Andrew Ranger has become our MP and I have arranged to meet up with him later this month to help in my struggles against this difficult Wrexham council.

• The £33,000 that has already been clawed back, does sound like a lot of money, but imagine if you had no pension; what funds would you fall back on to live, not just to exist. I have always used my Direct Payments responsibly and I was in a position where I could offer my team of staff long term job security. This is no longer the case. This is the very clunky Goldilocks theory of disability; “You shouldn’t have too little to live on, but you mustn’t have too much to live on, it’s got to be just right”. I am therefore constantly walking a tightrope over what money I have, what I can or cannot spend it on and arguments with the council about merely “existing” in my home or living a lively, happy and fulfilled life in the time I have left. This isn’t a good way to live (exist).

• Money aside, in Wales social care is largely governed by the Social Services and Well-being (Wales) Act 2014 (SSWBA 14) with 5 guiding principles: Voice and control, well-being, co-production, prevention and early intervention and multi-agency. The local authority seems to ignore the first three of these, so that I cannot take control of my life.

• The Council Adult Social Care team have a legal duty to complete a Care and Support Plan with me on an annual basis. However, the social worker, simply refuses to work and co-operate with me in a process of “co-production”, as required by the SSWBA 2014. I have not seen my social worker once this year, despite all the issues I am facing.

• I am a resolute campaigner and have been able to call upon my informal care co-operative for support, strategy and advice throughout my recent campaigning. It includes Chris Hall, John Henry and Jackie Owen from the Co-op Party together with others from across Wales. I am a strong supporter of co-operative values and principles, and my care co-operative has been invaluable to me.

• I am sure that the Co-operative Party would be concerned about the lack of co-operation from a North Wales Council. The Council do not understand or seek to apply any co-operative principles at all.

• My battle to take a short break to Florida (top of my bucket list) earlier this year was only achieved in the face of council resistance, with charity and generous public support via my “GoFundMe” page. Direct Payments is public money, and the council felt that I could not use money I had responsibly saved to take the trip of a life time to Florida. Ironically and unfairly, the public ended up paying twice for me to take this short break.

• I am a published author, having written three books, as well as managing a successful blog and webpage at nathanleedavies.com.

• I recently had a Petition before the Senedd seeking better clarity and support for recipients of Direct Payments. The Petition has just been closed with a recommendation for my proposal for a Commissioner for Disabled People to be sent to the Minister for Social Care. Would North Wales Co-operative Party be able to support this campaign in 2025 please?

• It should be noted that Scotland has returned to an ILF (Independent Living Fund) designed to help disabled people to live their best lives. As a campaigner on behalf of disabled people, it is my ambition to secure the Scottish example here in Wales and England.

• Others are less fortunate than me and they have fallen at the first hurdle, simply forced to accept whatever the council provides for them.

• We’re all aware of the difficulties that befell Baroness Tanni Gray-Thompson on her train journey to Kings Cross station, London when she had to crawl off the train unassisted. Why should disabled people in 2024 be forced to accept such indignities?

• Article 19 of the UN Convention on the Rights of Persons Living with Disabilities is quite clear that our rights are equal to others in the community.

• I will send further updates when there are developments in my situation. I am doing a fundraiser for Ataxia UK via my JustGiving page. Here’s a link to my JustGiving page: https://www.justgiving.com/page/nathan-lee-davies12-02-77

Nathan Lee Davies -10-10-24