"Lack of support for my family"

About: Hairmyres Hospital / Neurology Southern General Hospital

(as a relative),

My wife was recently moved in to a Nursing Home after spending some three years in two different hospitals following an operation to remove two brain tumours. Although the tumours were found to be benign my wife went on to develop a degenerative brain disorder which has left her unable to communicate with us in any meaningful way. Her condition is undiagnosed and I have been told that it is very likely to remain so. Not having a diagnosis has meant that my wife has received no treatment for almost two years, but has simply had her care managed. I have always felt throughout my wife’s hospitalisation a sense of isolation, particularly the last two years where I feel the medical profession have simply given up on her. This feeling is accentuated with her recent move in to the Nursing Home. It is as though we have been cut adrift from the medical fraternity.

I feel if my wife had a diagnosis there would be some form of monitoring, perhaps a measurement of her degeneration, which could be some kind of indication for her family of what is happening to her. Instead, what we have had over the last few years are doctors, when they speak to us at all, simply asking us if we see degeneration in my wife. As a lay person who visits my wife every day I find it very difficult to attain the level of detachment required to answer this question. This lack of input by the medical profession is indicative of the total lack of support for my family and I over the last few years. I find it very difficult to accept that in Scotland in the 21st century this is acceptable practice.

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Response from Susan Friel, Chief of Nursing Services, Hairmyres Hospital, NHS Lanarkshire

picture of Susan Friel

Dear Disheartened

I was so sorry to read your story, above. I would be very happy to speak to you about your experiences. We are keen to ensure that all aspects of our patients care is of the highest standard and that includes supporting their families too. We clearly have not done so for you and your wife. If you would be willing to get in touch with me to share your story, then please call me on 01355 584 475.

Many Thanks


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Response from Lorna Gray, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Dear Disheartened,

I am really saddened reading your story and am so sorry at how isolated you and the rest of your family have felt during what would already have been a very stressful time. I would join in reiterating what Susan, above, has expressed in that it is of great importance to ensure that carers feel supported and looked after themselves, and I am sorry that this has not been your experience.

I will pass your comments on to colleagues here in NHS Greater Glasgow and Clyde to look at what we can do better to support families and carers with a similar experience to yours, however I would also appreciate if you would get in touch with me directly on lorna.gray@ggc.scot.nhs.uk.

In the meantime, there are external organisations which are also extremely skilled in providing information, advice and support to families and friends who are looking after a loved one. I'd like to give you some details of these in addition to taking this forward internally, as this may be of help to you, or anyone else reading this post who may be experiencing something similar. NHS Greater Glasgow and Clyde has a Carer's Information Line which can help you to access support in your local area - their number is 0141 353 6504. I believe NHS Lanarkshire has a similar information line which is 0800 085 3945. Headway is also an organisation which provides help and support for patients and families who have experienced any type of brain injury – they have branches in both Glasgow and Lanarkshire and you will be able to find details on their website at https://www.headway.org.uk/Regions/Scotland.aspx, or on their helpline on 0808 800 2244.

I hope to hear from you soon, and in the meantime wish you and your family all the best.


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