Dementia groups slam Derry's diagnosis waiting lists

People in Derry, Strabane and Limavady face an anxious 15 to 16 month wait to receive a dementia diagnosis, Derry Now can reveal.

Shockingly, in West Tyrone and Fermanagh the current wait is 69 months, almost six years, from initial referral to diagnosis.

There are currently 420 patients on a waiting list for a dementia diagnosis in the whole Western Health and Social Care Trust (WHSCT) Area.

Derry man's shocking four year dementia diagnosis wait

Disgrace: local dementia groups slam length of waiting times for dementia diagnosis

Speaking to Derry Now, Foyle MP Colum Eastwood described the waiting times as a “scandal”.

The SDLP leader said: “The fact some people are waiting almost six years for a diagnosis after a referral in our Trust is a scandal.

“It is one of the worst things I have ever heard about the state of our health service.

“It is not a reflection on the doctors or nurses working to help as many people as possible, it is a damning indictment of how broken health services are and of the abysmal failure of politics to address it.

“Almost everyone knows a person or a family impacted by dementia. It’s a cruel condition that has a huge impact on a loved one and their entire family and social circle.”

Stressing the urgency of “catching the signs [of dementia] early”, the Foyle MP said.

“It is important so someone with dementia can maintain their independence for as long as possible. These waiting times, sadly, show that these patients don’t have that opportunity, even if they recognise the signs early.

“Every one of the 420 people on the Western Trust waiting list deserves the best chance at maintaining their independence and living a long, happy life.

“Their families deserve to have the longest possible time with their loved ones.

“This is an out and out disgrace and I intend to raise it at the highest levels of government.”

Dr Paschal McKeown is the Charity Director at Age NI, which is responsible for services, programmes and activities to improve outcomes for older people and ensure everyone can enjoy a better later life.

Speaking to Derry Now about the lengthy dementia diagnosis waiting lists, he said: “It is important people receive a dementia diagnosis as early as possible.

“This means they receive clear, timely information about their diagnosis and what it might mean for them and their family, as well as signposts to whatever support is available.’’

Martin Reilly, the National Influencing Officer for Alzheimer’s Society NI said tackling waiting lists and achieving faster diagnosis was “absolutely vital”.

He added: “A diagnosis means someone who is worried about dementia can get the help and advice they need. Alzheimer’s Society works with all the NI Trusts and has been collaborating with the WHSCT to provide support to people from the moment of their diagnosis and as their illness progresses.

“We know there are many people out there who are still waiting for their diagnosis and living with a great deal of worry and anxiety.

“We are keen to partner further with the Trust to provide the right level of support to people pre and post diagnosis.

“We would like to see faster diagnosis across the board, as well as a reduction in disparities across our local Trusts, where people are waiting longer in some parts of Northern Ireland than others,” said Martin Reilly.

Mr Reilly explained the government needed to prioritise diagnosis now as the North faced an increase in dementia costs over the next decade.

He said: “Diagnosis is mission-critical. Northern Ireland’s predicted rates are particularly high due to a range of health and demographic factors.

“More than 22,700 people in Northern Ireland are living with dementia, with over a third yet to receive a diagnosis. In addition, the number of people with dementia is predicted to nearly double to 42,000 by 2040. This has clear implications for our local Trust social care budgets.’

“There are signs of hope for the future in the form of research around new drug therapies and new ways of diagnosing dementia.

“Research is key in addressing the challenge of dementia. The new disease modifying drug therapies, which have received a great deal of publicity recently, will need to have an effective diagnosis system ready once they receive regulatory approval for use in the UK.”

Mr Reilly advocated starting to prepare the system and “building capacity, resources, and pathways to deliver new treatments and improve dementia diagnosis”.

He said: “So, it is key central government and the Northern Ireland Assembly make dementia a priority.’

“We are also working at pace to deliver new ways to diagnose dementia. A large project is already underway with Alzheimer’s Society working together with Alzheimer’s Research UK and the National Institute for Health and Care Research (NIHR).

“The game-changing Blood Biomarker Challenge will revolutionise the way dementia is diagnosed.  

“The project, which is being funded by a £5m award raised by players of People’s Postcode Lottery, will gather the information needed to introduce a blood test for dementia into UK healthcare systems.”

Dementia NI is a membership organisation which aims to empower and support people with dementia in the North “to live well” and to “drive positive change”.

Speaking to Derry News, Ashleigh Davis, Dementia NI’s Empowerment Lead highlighted the charity’s recently established Derry Empowerment Group.

She said: “The Derry Empowerment Group, like all of Dementia NI’s Empowerment Groups, is a place for people who have been diagnosed with dementia, and are in the early to middle stages of the condition.

“People come together to share experiences, provide peer support and consult with organisations to improve dementia services and policy.

“The Dementia NI Derry Empowerment Group is free of charge. I would encourage anyone with a diagnosis of dementia, in the early or middle stages of the condition, to attend. The group meets on a monthly basis.

“We are also starting a group in Limavady this week. For more information, call 028 9693 1555 or email info@dementiani.org.”

Ms Davis heads up a team of five Dementia NI facilitators throughout the North.

She explained: “When a referral comes through to Dementia NI head office, I would delegate our local Dementia NI empowerment facilitator in that area and they would arrange an initial visit with the person.

“We have a facilitator in Derry. They would explain what Dementia NI does and learn a wee bit more about the person and how their dementia is affecting them. 

“Dementia NI takes the approach there is life very much to live following a diagnosis and through our empowerment groups. We would encourage people to come along and be involved in the groups, to access peer support and friendships from other people in the same boat.

“That way they will have the opportunity to become better informed about their diagnosis and will realise it is possible to live well with a dementia diagnosis.

“That is one of the most important reasons an early diagnosis is so important. It means people get access to services like Dementia NI and they get access to appropriate resources, support and information through the Trusts’ Dementia Navigator Service.

“It also gives people the opportunity to make decisions for themselves and to have the ability to plan for their own future.”

Ms Davis added she would like to put a call out to offer people the opportunity to get in touch with their local Dementia NI Empowerment Group.

“I want to make people aware there is support in the Derry area and we also have a group which is currently being established in Limavady.”

In a statement to Derry Now, a spokesperson for the WHSCT explained: “The extended waiting times [for a dementia diagnosis] in the Tyrone and Fermanagh localities is due to an ongoing workforce challenge of medical staff.

“With a new Locum Consultant Psychiatrist now in post in the southern sector it is anticipated that waiting times will reduce to 26 months from April 2024.

“This is due to the Older People’s Mental Health Service currently undertaking a service improvement project to review all strands of service delivery including the dementia pathway and waiting times.”