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Care Opinion

Challenging to navigate end of life support

Posted By EDBL

"Challenging to navigate end of life support"

About: General practices in Lanarkshire Kilbryde Hospice Motherwell Locality Support Service / Community Nursing Team Motherwell Locality Support Service / Motherwell Home Support Service

(as a relative),

My mum’s situation changed quite suddenly from being entirely independent to requiring an increasing amount of care over a 6 month period until the end of her life. Whilst most of the individuals that provided this support were helpful, the system itself can be a minefield with lots of minor and some major challenges.

Homecare provided via her local council required constant oversight by family. A lack of funding at a service level and high levels of absence at operational level seemed to complicate matters daily - inconsistent carers and time slots, significant variance of the level of support given and poor communication with family and amongst staff too with regards to the even the most basic level of care required.

The District Nurses were a great support and always on the other end of the phone if not there in person - they were a lifeline for our family in times where the lack of support was overwhelming.

The GP surgery, overall really supportive and a lovely surgery. Coordinating prescriptions and blister packs, not straightforward though from the GP side and significant persistence required.

NHS Palliative Care, the hesitation in hospice referral really impacted on the suffering in the final stages.

Hospice support was fantastic once admitted, albeit the move was late and therefore exacerbating a very bad situation. I appreciate we are fortunate my mum was supported in a hospice at all where all of the staff couldn’t have been nicer. We will be forever grateful for the support they provided in her final 36 hours.

My opinion is that without family, my mum would have had a very slow and painful death without some of the most basic care needs being met. Individuals with family advocating for them and providing care are fortunate. For those with no one, I can only imagine how many things would slip through the net.

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Responses

Response from Margaret Tougher, Team Leader - Motherwell District Nurses, District Nursing, NHS LANARKSHIRE 2 weeks ago
Margaret Tougher
Team Leader - Motherwell District Nurses, District Nursing,
NHS LANARKSHIRE

Submitted on 29/04/2024 at 17:26
Published on Care Opinion on 30/04/2024 at 08:03

Dear EDBL

Firstly allow me to offer condolences on the passing of your mum. Also thank you for taking the time to provide some feedback on your mum’s experience and the impact it has had on your family via the Care Opinion platform.

From the perspective of the District Nursing team it is great to hear of the level of support we provided during a very difficult period.

However I acknowledge that you had some challenges also.

District nurses strive to provide the very best for patients within their own home and I am delighted that your experience with the team was a positive one.

Thank you.

Margaret

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Response from John McGeough, Service Manager - Home Support, North Lanarkshire Health & Social Care Partnership 2 weeks ago
John McGeough
Service Manager - Home Support,
North Lanarkshire Health & Social Care Partnership

Submitted on 29/04/2024 at 19:06
Published on Care Opinion on 30/04/2024 at 08:05

Dear EDBL,

I am sorry to hear of the passing of your mum and would wish to offer my condolences to you and your family. I am saddened to hear that you and your mum had such a poor experience of our service while being supported by the Home Support Service based within Motherwell,

I would be happy to discuss you and your mum's experience of the service further as I am keen to understand the specifics of your mum's care and support so that as a service we can learn and improve how we support people like your mum in the future. I have included my e-mail address if you wish to contact me directly to discuss your concerns further. My E-Mail address is mcgeoughj@northlan.gov.uk.

I hope you can see from my response that your feedback is valued, and we are keen to put improvements in place to ensure our service is meeting the needs of vulnerable individuals like your late mum. If you are open to discussing this in more detail please do not hesitate in contacting me.

Kind Regards

John

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Response from Margaret Mary Cowan, Clinical Services Director, Kilbryde 2 weeks ago
Margaret Mary Cowan
Clinical Services Director,
Kilbryde

Responsibility for the smooth running of all services relating to patients, carers and family members

Submitted on 30/04/2024 at 11:21
Published on Care Opinion at 11:21

picture of Margaret Mary Cowan

Dear EDBL

Thank you for taking the time to post your story on Care Opinion. As Clinical Services Director at Kilbryde Hospice, it’s important that I can hear the experiences of people who are using the hospice service. From what you have described, considering all the services you mentioned, I can imagine that the last 6 months must have been very difficult for your Mum and for you and her family coordinating her care.

You said that there was a hesitation in referring your Mum to the hospice. I’m very sorry that you experienced this. The hospice deals with referrals as soon as they are received and do our best to minimise the waiting time on our waiting list till admission. I am very glad that your Mum managed to get to Kilbryde Hospice eventually, albeit for a short period. You mentioned that when your Mum arrived at the Hospice the support was fantastic, and the staff were nice. From my perspective, I sincerely hope that you and the extended family received this level of support too. I hope your Mum’s final 36 hours were peaceful.

I will let our staff and volunteers see this very positive feedback. This will give them a huge boost. Thank you for posting this.

From a navigation perspective, I can see that the last 6 months have been challenging for you. If you wish to discuss any of the issues mentioned (now or in the future) with me or one of my colleagues in NHS Lanarkshire or South Lanarkshire Health and Social Care Partnership, then please get in touch with me on 01355 202020. We can discuss it and decide the best action.

Please take care of yourself in the coming weeks and months.

Kind regards

Margaret Mary Cowan

Clinical Services Director

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Response from Jennifer Montgomery, Improvement Coordinator, Quality Directorate, NHS Lanarkshire 2 weeks ago
Jennifer Montgomery
Improvement Coordinator, Quality Directorate,
NHS Lanarkshire

Operational Lead for Care Opinion in NHS Lanarkshire

Submitted on 02/05/2024 at 17:43
Published on Care Opinion at 17:43

picture of Jennifer Montgomery

Dear EDBL,

My condolences on the passing of your mum.

Thank you for sharing your experience during such a difficult time, of the GP during your mum's end of life care.

I am so pleased to hear that overall things were managed well by the GP surgery despite the complexities with medications.

Unfortunately GP practices are independent contractors and as such are not registered to respond on Care Opinion. Please could I ask that when you are ready you contact the practice manager who will ensure your kind words reach the correct staff members.

I would like to send you light and peace during this difficult time.

Kind Regards,

Jenni

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