Following a series of MRI and SPECT scans, my beautiful wife, Margaret, was formally diagnosed with Alzheimer’s disease on 9 June 2018. Married in 2001, when Margaret was 61 and I was 51, we were both now retired and living in Northallerton, North Yorkshire.
Support following a dementia diagnosis
In Scotland, the Alzheimer Scotland charity supports dementia patients for at least one year after diagnosis. In England and Wales, once you are diagnosed with dementia and suitable medication is established to slow down the progression, you are left to your own devices. Unlike cancer, there is no medical pathway to assist you through the challenges.
I asked our GP where we could meet up with other families dealing with dementia and he suggested our local Age UK would know. I visited Age UK and as I was leaving she said “but of course you get attendance allowance”, something no one had ever told us about. Age UK completed the application form for us and Margaret’s attendance allowance started on 29 November 2018. Months later, when we visited our GP’s frailty nurse, we discovered we were also eligible for council tax discounts.
In order to qualify for council tax reduction, or SMI (severely mentally impaired) disregard, as the terminology states, a person with dementia is required to:
- Get a certificate from their GP to say when the GP believes the dementia started; and
- be in receipt of/qualify for one of a list of state benefits, generally attendance allowance (known as pension age disability payment in Scotland).
Time to change the law
The present laws say that only when a person with dementia has met both criteria can they qualify for council tax reductions of 25% or 100%. My argument has always been that, having met both criteria, the reduction should apply from the date the dementia was certified by the GP, and not after they have completed a 31-page, 52 question attendance allowance form. Because of the lack of awareness that attendance allowance even exists, this can be months or even years after their diagnosis and, consequently, they could lose out on thousands of pounds of council tax reduction.
I took our local council to a tribunal, and then to the high court, over this issue. The judge said that without a change in the law the council is correct.
In response, I started a petition to change the law. Even though my petition did not reach the 100,000 signatures needed to take it before parliament, I gained the support of our local MP, Rishi Sunak, who, while he was chancellor, put my petition forward to the UK Parliament.
The petition was raised on 18 June 2022, however, it was not approved. So I decided to approach the devolved nations with the added intention of ‘encouraging’ the UK Parliament to agree. Northern Ireland already follows my proposal.
I submitted a petition to the Welsh Senedd on 14 October 2022, but it did not achieve the required 250 signatures. Also, they look for the majority of the signees to be living in Wales.
The Scottish Parliament takes up the case
I also submitted a petition to the Scottish Parliament on 26 September 2022. It went through the Citizen Participation and Public Petitions Committee and was approved for submission. It was responded to by MSP, Shona Robison as below:
PE1976/N: Backdate council tax discounts for dementia to the date of GP certification
Cabinet Secretary for Finance and Local Government written submission, 10 December 2025
Thank you for your recent letter regarding the Committee’s discussion on 25 November 2025 of PE1976.
My officials continue to consider this important issue and options for addressing it in the context of the existing legislative framework within which council tax and severe
mental impairment interacts.
As part of our exploration of legislative options, we will work in partnership with local government, in line with the Verity House Agreement. We will therefore work with
COSLA, local authorities and other stakeholders to ensure their views are fully considered and to minimise the risk of unintended consequences.
I appreciate the Committee’s interest in this issue. An update will be provided to the Committee once the necessary work has been completed and proposals are at a
more advanced stage, which I expect to be early in the next parliamentary session.
Yours sincerely
SHONA ROBISON
On 21 January 2026, the Directorate for Local Government and Housing wrote:
“The Committee will receive a further update once this programme of work has progressed and proposals are at a more advanced stage. The Cabinet Secretary has indicated that she expects this to be early in the next parliamentary session following the forthcoming Scottish Parliamentary elections on 7 May 2026. She looks forward to the opportunity for further consideration of this matter at that time.”
And now we wait
This petition has taken a long time to get this far. I am optimistic that progress will be made in the Scottish Parliament in the coming months, and hope the UK Parliament will follow suit.
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