Care Opinion

Palliative Care at Home

Posted By footballhz43

"Palliative Care at Home"

About: Antrim Area Hospital / Ward B5 Dalriada Urgent Care East Antrim / Community Specialist Palliative Care Team East Antrim / Home Care East Antrim East Antrim / Hospital Diversion Nursing Team East Antrim / Social Work

(as a carer),

My 89 year old mother was diagnosed with secondary brain cancer in May and was discharged to palliative care at home one week later.

 - The Trust provided carers 4 times per day and the care provided was excellent. They treated my mother with care and dignity and she enjoyed their visits.
 - When my sister & I visited her on Wednesday in hospital she was still mobile but when she was brought home by ambulance she was confined to bed. No explanation was provided to the family for this change and it resulted in a very difficult and stressful bank holiday weekend for the family until the care package was adjusted to reflect this.

 - To facilitate the discharge the hospital made promises the community could not deliver - we were assured of a level of support from Macmillan/NI  Hospice that did not materialise, and promised that if care at home was too much then alternative arrangements could be made.

It took 6 weeks to get a named social worker and when they did visit they were disparaging about my sister's request for respite which added further distress. When sending an 89 year old patient home for palliative care there needs to be an acceptance that the family carers are possibly pensioners themselves and also require support to deal with the situation. 

 - What would have been invaluable on discharge was a list of all contacts /details of who to contact when x,y, or z happened. This would have improved the initial days immensely and surely is a QI project waiting to happen.

 - The care provided by Marie Curie & NI Hospice was excellent but it was ad hoc and often last minute. We needed more - we got nothing in the final 2 weeks of my mother's life when we needed it most. Please do not raise expectations.

 - The response and care provided by Dalriada OOH was excellent.

I've seen appeals on social media asking for families to work with healthcare providers to expedite discharge to help create bed space. I would like to appeal to them to work with the families so that patients and families do not feel overwhelmed & abandoned in the process.

Based on my experience I would not recommend taking a family member home.

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Responses

Response from Janet Shields, Complaints Manager, Governance, Dalriada Urgent Care 14 months ago
Janet Shields
Complaints Manager, Governance,
Dalriada Urgent Care

Submitted on 06/09/2023 at 12:41
Published on Care Opinion at 15:22

Thank you for your feedback.

I am extremely grateful for your correspondence and hope that should you require to use Dalriada Urgent Care in the future you will receive the same quality standard of care that we aim to provide.

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Response from Cathy McCoy, Clinical Service Manager, Acute Medicine, NHSCT 14 months ago
Cathy McCoy
Clinical Service Manager, Acute Medicine,
NHSCT

Submitted on 06/09/2023 at 14:02
Published on Care Opinion at 14:02

Dear footballhz43

Please accept my condolences on the death of your mother

This sounds like a very distressing time for you and your family. I would like to look into this further and understand the situation.. Please can I ask you either to contact myself or the complaints department with your mothers details and I will look into this.

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Response from Cathy McCoy, Clinical Service Manager, Acute Medicine, NHSCT 14 months ago
Cathy McCoy
Clinical Service Manager, Acute Medicine,
NHSCT

Submitted on 08/09/2023 at 13:54
Published on Care Opinion at 13:54

Dear footballhz43

My name is Cathy McCoy

Clinical Services manager

to get in touch with me on 0289442000 Ext 334546

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Response from Diane Boyle, Divisional Social Worker, Northern Health and Social Care Trust 13 months ago
Diane Boyle
Divisional Social Worker,
Northern Health and Social Care Trust

Submitted on 26/09/2023 at 15:45
Published on Care Opinion on 27/09/2023 at 13:48

My name is Diane Boyle and I am the Divisional Social Worker in Community Care in the Northern Trust.

Thank you for taking time to give us your feedback. It is great to hear your mother had a positive experience with the Carers provided to her and that you had excellent responses and care from the Dalriada Out of Hours Service.

I am sorry to hear about the negative experiences you and your family had following your late mother’s discharge from hospital and sudden deterioration. What was already a very stressful situation, having received her diagnosis of secondary brain cancer, was made worse by not being provided with the right information on discharge. You have explained what your expectations were of the supports available only to find the reality very different, facing a long wait to get a named social worker and then hearing the respite request being disparaged.

As a social worker I am particularly sad to hear you faced such a delay in getting a visit after your discharge from hospital and did not get the support needed when your family asked about respite. This is not what I want for you or any other family who require Social Work services, especially at a time when help, support and understanding were more important than ever. I am sorry that you felt abandoned and overwhelmed after taking your mother home.

I am sorry the social work visit added further distress. You are absolutely correct when you say families and carers, especially when older themselves, require support to deal with the complex situations illness can bring. This is what the Social Work service aims to deliver and I am sorry this was not your experience.

With your permission, I would like to share this message from you with our Social Workers, both in Community and Hospital services. I think hearing your experience would really help to guide their work.

Thank you for your suggestion about a Quality Improvement project in relation to details for service users and families on discharge. I have been in your shoes as a family member myself and, even as someone who works in the NHS, I often found it difficult to source contact details and know who to contact. As you have described there are many services that are required to provide palliative care to those that choose to be cared for at home and it would be useful if this could be shared with other professionals within the community teams as I would not want another service user or family to have a similar experience.

Thank you for sharing your experience. I will do my best to ensure the messages you have brought reach the right people. Please let me know if there is anything else that would be helpful or if there is anything you would like to talk through.

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