"End of life care in Dementia."

Although I am a family member I will refer to the patient as Mr A.

The social situation broke down at home. Mr A became unmanageable and agressive towards his wife who was really struggling to understand this disease.

The family requested emergency respite. During this respite it became clear just how difficult the situation at home must have been. We are a close family but we could not be there 24 hrs a day and obviously Mrs A was not telling us just how hard it had been.

His respite was in a local care home in Stranraer. It was a disaster from start to finish as they struggled to manage him and the family were often alerted by members of public that he was wandering in the street. Meeting after meeting it was agreed that he should go to Cornwall Park in Newton Stewart (25 miles away).

The care provided here was excellent and he was managed well!

After some time it was evident that it was difficult for Mrs A to travel 25 miles on a regular basis and she felt she wanted him closer to home and so it was agreed that he would be transferred to Thornycroft in Stranraer.

The staff struggled to manage him from the start. We would get regular phone calls to assist with administering meds and showering etc. It felt like the family were the main carers in a care home. Due to staff being so poorly educated in dementia and approaches to aggression things quickly broke down.

During visiting we heard staff say "don’t go in there there's sh*t everywhere", we also noted that some residents were left sitting alone at the dining table for long periods of time, no one to prompt them to eat or drink. We understand that pay is low and staff are short but we did have grave concerns about the level of care.

Mr A was put under section (very sad for such a once proud big family man) and transferred to Cree ward at Midpark in Dumfries.

He remained in Midpark for roughly four months where his mobility deteriorated very rapidly. Within weeks he was off his feet and bed bound. It was clear he was in pain, whether the pain was neurological or from some underlying disease, we are unsure.

He was given pain relief & antipsychotics and by the end of his stay he had lost 5 stones.

Family were becoming very concerned that he may die 75 miles away from home and so requested a meeting to discuss transfer to appropriate EMI in Stranraer. It was agreed that he would be transferred to Darataigh (a local EMI intermediate unit with six beds) within a week to ten days.

Four weeks later a family member received a voicemail to say he was being transferred back to Thornycroft.

As a family we were not happy with this decision being taken without discussion and indeed without the consultant (who was on A/L). We requested a further meeting to voice our continuing concerns.

The reasons given were that he was not "settled" enough to begin with but by this point he was "beyond" Darataigh! By this point it was agreed he end stage dementia and was now palliative.

It was agreed that he could be transferred back to The Galloway Community Hospital (Dalrymple ward) to be assessed and if he improved he may be moved to a nursing home 25 miles away.

By this stage, all the family wanted was for him to be pain free and to die locally with dignity. We hoped this meant he would be well looked after but how wrong we were.

Immediately as I went in to visit the day he arrived, I was quizzed, "where's he going? he can’t stay here, we are a busy ward, this ward is for rehab". Soon after, a nurse came to the ward rubbing her hands, "good news! Cumloden have beds, we will get him away by Monday! "

Charming!

Since then we have had comments such as "there is no silver bullet for this". He is in pain all the time. Charts are not filled in appropriately (one states he is orientated). Pity we missed this as family haven’t seen him orientated for two years. We have had to request pain relief on a daily basis & that his fentanyl patch is changed as well overdue.

We requested that the palliative care team assess him. They carried out assessment and wrote Kardex up for meds and left recommendations. It took four days for this to be commenced after quite some pushing from family and further contact with Palliative but he is yet to receive any of the meds written up for sub cut.

We feel if Mr A was dying from cancer, the care and pain relief provided would not be questioned.

The lack of understanding in dementia is abysmal. Staff continue to ask "Are you sore? Do you want a drink?" and expect an answer. If he winces or is agitated or angry, give him pain relief! Offer him fluids as often as possible! (not the case).

The family are exasperated. We worry we are seen as complainers when all we are asking for is his basic care needs to be met. The dementia is no longer the issue. He is end of life and should be treated with respect and dignity and should be able to end his days in his home town. If our local NHS is refusing to provide this and making it as difficult as possible, what hope is there for improved dementia services in the future?

We have been told he will be staying where he is and the following day told (not directly) that he is only there until his pain is managed. But no evidence of completed Abbey Pain Scale used and it is very worrying that it is left to staff discretion as to whether or not he receives pain relief.

Communication has been disgraceful and all I can say is, as a local supporter of our local hospital I now understand the outcome of the recent inspection. Dementia Awards may look good in the local paper but practically our services are so disjointed and communication so poor, you couldn’t follow through snow never mind making it a clear pathway for older, confused adults.