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Carers and hospital - Carers UK Forum

Carers and hospital

Share information, support and advice on all aspects of caring.
Users of these boards might be interested in this article I've written for Guardian Professional:

http://www.theguardian.com/healthcare-n ... -knowledge

Best wishes

totally agree
Allan, this is such a good article. I hope it will make waves.
I am an amateur compared with you, having cared for my husband, who has Lewy Body Dementia, for only a few years: he is now in a residential home. But even I felt that I had some worthwhile information and insights to impart to the medics and people from Social Services, and that these contributions were usually brushed aside. After all, they probably thought, what does an archaeologist know about dementia, compared with a hospital consultant or a qualified nurse, or even a social worker? Quite a lot, when she has been observing the condition in her partner of 40 years, from its earliest subtle and ambiguous hints to the full-blown, unmistakeable symptoms of loss of memory and speech, hallucinations, Parkinsonian tremor and loss of balance, and so forth.
The partner/carer is the person who has known the sufferer all along, who knew them when they were well, and who has seen every phase of the beastly disease as it progresses. We obviously have a much more holistic view of the patient than a health professional who first met them half an hour ago and must base any assessment on a first examination and the perusal of existing medical notes (if any).
Carers already save society eye-watering amounts of money by their selfless devotion. To spurn the informed contribution they can make into research on degenerative conditions adds insult to injury.

Allan...thank you so much for sharing this article. You have spoken for so many of us that have been in a similar position and continue to experience similar treatment day after day with the "professionals". I would also be interested in reading or having details of Neglected Voices that I believe you have written?

Bell x
Yes, an excellent article.

My recent experience of having caree / mother in hospital was not a favourable one. They treated the infection but ignored a lump, saying that would be treated as an outpatient after the stay in hospital. So cost of two ambulances later and GP visit home could have been saved if only they had listened to me in the first place. I knew that the two were not separate. The problem is hospitals are compartmentalised and do not treat the whole person. One team treats, in this case, the infection and one separate team treat the lump and never do the two speak. That is left to us, the carers, but what about those patients who have no-one to act as advocate?
Link to 'Neglected Voices' is at the bottom of the Guardian article.

Or go to http://www.disabilityarts.org/Neglected-Voices
This is SO true.

We are often dismissed or a quoted, "The carer reports that ..."

Carers are on the only people co-ordinating care and treatment and who have infinite wisdom in understanding and advocating for our carees.

The main issue with the person we care for entering hospital for what may be a lengthy time is the loss of benefits after the 28 day rules even the carers allowance can stop but we continue to care for them when they are hospitalised ...
It was carers' week? I missed that.

Great article. "I get no sense that anyone would feel anything was missing if my voice went unheard".
Great article. Shared on facebook and twitter too