“Lifeline” Portsmouth dementia service axed leaving beleaguered carers struggling to cope

The decision to scrap two specialist dementia nurses offering support and expertise for suffering carers has been criticised by those left picking up the pieces.

Anne Scowen has been the carer for her husband since 2018 who is now in the later stages of dementia. She told The News a Portsmouth dementia community has “lost its lifeline” after the decision to cancel the Remind service in August. 

The service was delivered in partnership by Rowans Hospice and Solent Mind. As part of the scheme, support was provided by two clinical nurse specialists who were employed by Rowans Hospice. The hospice was contracted to provide the service by Solent Mind, which is commissioned by NHS Hampshire and Isle of Wight.

Anne said: “Now our only option for support is an e-consult or join a long telephone queue or search the dementia and Alzheimer's webpages. Not all of our growing community are good with computers as an aged population.”

The city resident, who attends a carers support group in Cosham, continued: “We all say to each other ‘one day at a time, that is all we can do’, it is our mantra. We watch our loved one's die gradually, fading a little bit more every day, for years and years. That is why we feel the loss of losing these two nurses so much, they were there for us.

“When the final stage comes, we have cried with these nurses, they know us and our families, they hold us, advise us, pick us up afterwards until we are ready to move on from all of the life where we gave all of ourselves for so long.  

“Dementia isn't pretty and it doesn't touch people the way other diseases do. The dementia carers of Portsmouth are usually old, largely isolated, knackered, stressed and war weary, and eventually housebound. If the carers haven't succumbed to exhaustion or are paying at least £1,600 pounds a week on a care home; then they will be struggling beyond imagination. 

“We are conscious that we are a group of old carers, living one day at a time as a coping strategy, but we feel that this is the last straw. We were only just coping. The loss of this wonderful service means we are even more isolated.”

Anne says she has contacted her MP for Portsmouth North Amanda Martin and councillors as she bids to get the decision reversed by showing the value they have. “As a community we have collected individual carers' experiences of how these two nurses have helped them personally. In some cases, these nurses saved lives. At present I have 15 individual experiences,” she said.

“To be frank the dementia community in Portsmouth largely relies on charities to fill in the gaps. These two nurses for the whole of the city were managed by Rowans Hospice. Financially they could no longer subsidise them. 

“As a group we don't understand why, when dementia is on the increase in the city that the funding comes through such a convoluted way? Why was this service not attached to the older person's mental health team and social care teams?”

A joint spokesperson for  NHS Hampshire and Isle of Wight and Portsmouth City Council said: “Unfortunately Rowans Hospice made the difficult decision to give notice on their element of the contract, which means the service provided by the clinical nurse specialists has been discontinued. 

“Solent Mind will continue to provide information, advice and support including citywide activity groups for people and carers with dementia. We are supporting both providers with signposting patients to other services which can help to meet their needs. 

“Where Solent Mind are unable to support due to the removal of clinical nurse specialists, service users will be directed to specific NHS services designed to support those experiencing dementia either through their GP, NHS 111 or the Older Person’s Mental Health team.”

It is understood the removal of the dementia nurses will now be discussed at a full council meeting in the near future.