Inequalities in Dementia Services

Holly Lynch Excerpts

Thursday 16th May 2024 Westminster Hall

[Holly Lynch (Halifax) (Lab)]

It is always a pleasure to see you in the Chair, Ms Rees, so thank you for being here this afternoon. I pay tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams). In preparation for today’s debate, I looked back in Hansard at previous contributions I had made in debates on dementia, and I was struck by the fact that every single one started the same way: by paying tribute to her. On every occasion I have spoken about dementia, it has been in a debate secured by her, and every time I have attended an event on dementia or Alzheimer’s, it has been hosted by her. She trained me in a workshop back in 2016 to be a dementia friend, and she is the most incredible advocate on behalf of all those living with dementia, and their carers and families. I really do, with all sincerity, pay tribute to her for the incredible work she has done on this cause.

We are blessed across Calderdale with some truly brilliant people and volunteers who work tirelessly to improve the lives of those living with dementia, their carers and their loved ones, and I will pay tribute to them later in my remarks. At a recent event at Halifax town hall, I was asked to host a Q&A with Scott Mitchell, who was married to the wonderful Barbara Windsor for 20 years before she passed away—six years after receiving a dementia diagnosis. Scott is one of the most incredible advocates for those with dementia, and it has been a pleasure to get to know him better following that event.

There are not many things Boris Johnson really got right in his time in office, but credit to him for setting up the Dame Barbara Windsor dementia mission, which launched in August 2022. I was so pleased that Scott was officially appointed the people’s champion for the dementia mission in March this year. Scott recently introduced both myself and the shadow Secretary of State for Health, my hon. Friend the Member for Ilford North (Wes Streeting), to the co-chair of the mission, Hilary Evans of Alzheimer’s Research UK. I am delighted to say that no one was left in any doubt that we 100% support the mission, and will very much do so if we have the opportunity and privilege to be in government in the not-too-distant future.

The work of the mission really matters. As my hon. Friend the Member for Oldham East and Saddleworth has outlined, the numbers on dementia are nothing short of terrifying. Nearly 1 million people are living with dementia in the UK; with an ageing population, that is set to increase to 1.7 million by 2040. That means that one in two of us will be affected by dementia in our lifetime, either because we will care for someone with the condition, develop it ourselves, or both. Sadly, dementia is the UK’s biggest killer, accounting for more than one in 10 deaths. Nearly 75,000 people died from dementia in 2022, which is an increase of 5,000 from 2021. Shockingly, those numbers will be us: one in two of us in this room will be affected. It is enough to make you want to throw the whole kitchen—never mind the kitchen sink—at finding treatments and solutions as part of early and effective diagnosis and treatment pathways.

I am grateful to the Alzheimer’s Society, which was in Parliament yesterday at an event hosted—again—by my hon. Friend. It told me that the diagnosis rate for those living with dementia in Halifax is 66.1%, so around a third of those living with dementia do so without a diagnosis, which could unlock care and support.

It is in everybody’s interest to get this right. My hon. Friend talked about the fact that, while we do not want to reduce decisions about people’s wellbeing and their health and social care to facts and figures on finances, it is clearly nonsensical not to get a grip on this issue, because that would both deliver economic benefits and potentially transform people’s lives. Dementia has a huge impact on our economy and is costing the UK £25 billion every year—I think my hon. Friend actually had a higher estimate. However, Alzheimer’s Research UK is keen to stress that investment in research also has economic benefits, and every £1 invested in dementia research generates £2.59 in the UK economy.

The Alzheimer’s Society’s recent report on post-diagnostic support for dementia, “Left to Cope Alone”, engaged with over 2,000 people affected by dementia. Just 25% said they or their loved one had had an annual dementia review within the last 12 months. Only 16% said they had received enough support from local services in the last 12 months, which, I am sorry to say, reflects the experiences of too many families I have spoken to. It has to be said that investing in the NHS workforce, in diagnostics and in research and treatments will pay dividends. There is reason to be hopeful about the progress being made and the breakthroughs under way, as my hon. Friend touched on, but now is the time to redouble our efforts, not to take our foot off the gas.

At a local level, we have some brilliant people in Calderdale who have dedicated a great deal of time, going over and above, to provide care and support for those living with dementia and their families. I pay tribute to Chris and June Harvey, who run the wonderful Memory Lane Café for people with dementia and their carers. Chris and June have been instrumental not only in running pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, but in setting up and delivering campaigns to make Sowerby Bridge and Halifax as dementia-friendly as possible. Alongside Shabir Hussain of Bluebird Care, they have hosted events bringing together organisations and local residents to achieve that aim, and have engaged directly with businesses to urge them to consider all the ways in which those living with dementia, and their carers, can feel supported in shops in the town centre.

[Andrew Rosindell]

It is absolutely wonderful to hear about the work being done in Halifax. So much of that work in our own constituencies depends on voluntary support and voluntary organisations. I visited the Dementia Music and Social Club at the United Reformed Church opposite my office in Romford. Every Wednesday, that wonderful organisation brings together lots of people from all over Havering who are suffering with dementia; their friends and family go with them, and it is a very happy, fun afternoon. But the club gets no support, and they have to raise all their own funds—they get nothing from the local authority, the Government or any other funding streams. Does the hon. Lady agree that we need to do more to support local voluntary efforts? People need support; they need family and friends around them. Bringing together people who have the same condition is a light in their lives and gives back purpose. It is so important that we do more to support local communities to support people who are suffering with dementia.

[Holly Lynch]

The hon. Member is absolutely right. We have got into the real substance of the inconsistencies and the variations in rates of diagnosis. That really does highlight the inequalities that exist, depending on where someone is in the country. Beyond that, there is a real mix: there are so many local volunteers and brilliant groups that do so much good work, but that is not replicated evenly across the country. The hon. Member is quite right that the difference that some of the groups he mentioned make is transformative and a lifeline, not only for those living with dementia but for their families and carers—especially if those pop-up cafés and services are anything like the Memory Lane Café in Sowerby Bridge. He speaks of what great places they are to visit and be a part of. There is not that sadness; there is a shared sense of supporting each other, with lots of activities and lots of fun being had as well. That makes a really big difference to people’s lives, and the hon. Member is quite right that, with a little local authority and Government support, that could be replicated and enhanced and more people could be supported. The hon. Member makes a really important point.

In addition to the Memory Lane Café, we have a young-onset dementia and Alzheimer’s group set up by Julie Hayden, which provides support for younger people with dementia and for their carers. I know that is very much valued, especially by those of working age who have been diagnosed with dementia or Alzheimer’s really quite early in life. I also pay tribute to Inspector Neil Taylor of West Yorkshire police, who is the chair of Dementia Friendly Todmorden and a Dementia Friends ambassador. He has worked so hard to promote best practice within West Yorkshire police, establishing the Herbert protocol, whereby the police and other agencies encourage families and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The protocol takes its name from George Herbert—a veteran of the Normandy landings who lived with dementia. I am grateful to those people and to the others who make such a big difference. As we have said, they are all volunteers— they are unpaid—and that speaks to the very point of the debate.

The provision of services is still uneven, and families and individuals who need to make use of services will find that that provision can vary significantly. They are local heroes and I am so grateful for all that they do. I look forward to the Minister’s response and, once again, I thank my hon. Friend the Member for Oldham East and Saddleworth not only for securing this debate but for all that she does.