"End of life care in Dementia."

About: Belmont Care Centre Cornwall Park Galloway Community Hospital / General Medicine Galloway Community Hospital / Geriatric Assessment Midpark Hospital Thorney Croft

(as a relative),

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.

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Responses

Response from Care Inspectorate (PIB)

Thank you disheartened2015 for sharing your story. We have received the full text of this restricted story and can see that one of the providers has given a reason for restriction.

The Care Inspectorate is the official body charged with inspecting care services and making sure that people get the right standards of care. We carry out regular inspections and also can investigate complaints and concerns at any point.

We will certainly look into the issues raised to see what role the Care Inspectorate can play. We regulate all care homes in Scotland. (We don't regulate NHS health services, however.)

In this particular case, we would strongly encourage you to contact us direct on 0345 6009527 to speak with the inspector who has read the full story you wrote. We would like you to clarify for us some specific bits of information about the story you have written. This will help us look into this in more detail.

Thanks again.

The Care Inspectorate Team

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Response from Patient Opinion

We are posting the statements below on behalf of the relevant service providers.

Statement on behalf of Thorney Croft

The submission ‘End of Life in Dementia Care’ provides a review of several care homes and hospital services in Dumfries and the surrounding areas.

The review includes comment about two care homes owned and managed by Community Integrated Care – Cornwall Park, which received favourable comments, and Thorney Croft, which was the focus of several concerns. Whilst we are pleased that the review highlighted that Cornwall Park delivers the high standards of care that we expect of all of our services, we are concerned and disappointed to read the complaints made about Thorney Croft.

In response to this review, we have launched a full internal investigation, which will be led by impartial and experienced dementia care professionals, who will be rigorously assessing standards at the home. As Managing Director for Scotland, I will be personally contacting the family members who have raised these concerns, to understand more about their experiences and to ensure that we fully act upon their feedback. We have also contacted the Care Inspectorate to make them aware of these concerns, and will fully update them on our investigation.

As our investigation is ongoing, we are unable to provide a full overview of our findings and the improvements that we will be making to the home, at this time. However, we acknowledge that the experiences highlighted in this review fall short of our expectations for providing high quality care, and we will be doing everything possible to ensure that they are not repeated again.

I would like to assure the public and the family members who posted this review of our commitment to taking robust and swift action to resolve any issues found as a result of this complaint and our own investigations. I would also like to offer my sincere apologies to the family members for any negative experiences and to thank them for bringing these concerns to our attention.

Karen Sheridan – Managing Director for Scotland, Community Integrated Care

Statement on behalf of Cornwall Park

Cornwall Park is committed to delivering the highest standards of care to the people we support. We are pleased to have received this positive feedback about our care and would like to express our thanks to the family.

Cornwall Park Team

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Response from Patient Opinion

We are posting the statements below on behalf of the relevant service provider.

Dear disheartened2015

Patient Opinion has copied us into the section of your story which refers to NHS Dumfries and Galloway services and have just let us know that we are able to respond to you now.

I am so sorry about so many aspects of the care of Mr A has received whilst in our care and the way relatives have been treated too. I can completely understand your feelings of exasperation and am so disappointed that this experience with our services has led to this. I would be grateful for the opportunity turn this situation round and make sure we are doing our absolute best, as we should be, for Mr A and the family.

I would very much appreciate you being in contact with me personally so I can apologise and start to put things right. My contact details are hazelborland@nhs.net.

Thank you so much for choosing to share your experience with us and I hope to speak with you very soon.

Best wishes

Hazel

Hazel Borland, Nurse Director, NHS Dumfries and Galloway

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Response from Patient Opinion Scotland

We are posting the response below on behalf of the relevant service provider, Belmont Care Centre.

It is disturbing to read the poor experience endured by the family of both the health and social care sector. The stress of a loved one being placed in care is significant and it would appear the family and their relative have been let down on a number of levels. Within our organisation we positively promote a duty of candour and embrace the opportunity to engage with our residents and their relatives to ensure the experience is a positive one. On those rare occasions where we could perhaps have done things better we are eager to engage with our families to see how we may have achieved a better outcome.

If the family would like to make contact with us, we will be pleased to meet with them to discuss their experience and to ensure lessons are learnt.

Contact Helga Goutcher, Operations Manager for Scotland at Helga.Goutcher@stphilips-care.com

Paul Farmer

Managing Director - St Philips Care

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Update posted by disheartened2015 (a relative)

I wish to thank all who have responded. I do not intend this story to be a complaint but I do wish to highlight

1.deficits in care.

2.staff attitudes.

3.The difficulties of providing adequate end of life care in a rural setting.

4.Confusing pathways.

5.Poor communication.

6.Lack of training / understanding of nursing patients with dementia.

7.Lack of respect for patient,family,Dr's and consultants decisions.

8. Good quality care from certain individuals.

9. The need to review systems, pathways and policies for future care of others.

10.The need to bring all services together to ensure families and carers know exactly who to contact and when.

11. Awareness of the difficulties in a rural area where family members and close friends work together and where a "culture" develops in the working environment.

Basically, I would like the story of this journey to ensure no one else suffers the same distress.

Update posted by disheartened2015 (a relative)

Sadly, my relative passed away recently. I felt one of the things I must do is praise the staff at Dalrymple ward.

It has been a very long and very difficult journey and due to miscommunication and a degree of mismanagement of the situation, the family are clear no fault lies with those working on the floor.

The care, especially in the late palliative stage has been first class. We cannot thank the staff enough.

It's such a shame so much is expected of them when they can't possibly be everything to all.

One last suggestion might be for management to spend a month in a warm busy ward with patients ringing constantly.However, I'm sure managing the hospital and community services from Dumfries will solve all the issues.

Thanks again to all staff, you've been fantastic!!