My name is Sally and I’m a former carer for children with special needs, a current carer for my autistic son and I’m currently working for a local GP surgery.
I have been asked to be the new Palliative Care Lead for the surgery and charged with making recommendations to ensure we are supporting palliative patients and their carers as much as possible.
I would greatly appreciate any idea’s or feedback/experiences you may have, I think it’s important to make sure we’re listening to those who use and need our services the most so that we can provide practical and needed support.
A massive thank you in advance to anyone who spares me their time to write a reply, I may not be able to respond to every single person but every single post will be read and taken on board.
Why not do a survey to get extra information? Write down some questions and use surveymonkey to design a survey. Or you can make a list of recommendations for improvement. Also try to talk to people who use that practice. Listen carefully to their views and opinions. Bear them in mind. Who uses the surgery at the moment?
Ask questions.
My husband has been on palliative care for nearly 2 years. He has severe dementia and copd. The one observation I would make is that we no longer see a palliative care nurse, really because my husband is taking longer than expected to die. So try to keep contact with patients. I do feel that I have just been left to get on with caring for him.
I am delighted to see you talk about supporting carers as well as patients. When we were contacted by the local palliative care team, they explained they were there for ‘difficult questions’ as we’ll as pain relief etc. OH did not need their physical care or medication at that point and declined the opportunity to talk. No-one asked me if I needed to talk, so I was effectively cut off from them by his answer. I was too overwhelmed to be pushy and ask.
I hope the role goes well for you.
(I did get help later on, from our local cancer care centre, so I was not left to struggle alone for long.)
One of the TRUE bibles on the relationship between palliative care and family / kinship carers :
__
A systematic review of psychosocial interventions for family carers of palliative care patients.
Written in 2010 and still as relevant today as it was then … even more so once the effects of Austerity are factored in ? ( Despite all the gesturing by the NHS and others , a case of family / kinship carers being seen … but not heard ? )
Palliative care … a PART of the whole system of the NHS and social care … NOT separate to it … just as WE are a PART of same said system.
There should be NO fences in the WHOLE system … at worst , Chinese walls ???
I’m a former family carer but speaking on this subject as a professional paid careworker re one of my clients. She has been “End of Life” for at least 18 months, and has been bed bound the whole while, last stages of dementia but one could say plateauing at EOL for 18 months with little change. Little quality of life, double incontinent, lost speach and all mobility but still keeps going. Several recent small fits have receiceived unwanted interventions by care agency managers insisting on paramendic call outs. There has been a DNR in place for several years and family have requested no return to hospital. The managers are saying insufficient to not call paramedics dispite written info from Dr and family to say must be kept comfortable at home. I think clearer guidance and AND (Allow a Natural Death) forms should beissued where appropriate.
I also think a palliative care phone number should be made available for family to be able to contact District Nurses when needed and not join the inevitable answerphone queaue.
Sounds an excellent idea.
I am carer for my elderly husband (much older than me) he has multiple issues including C.O.P.D.; pulmonary fibrillation; prostate cancer; and incisional hernia etc., etc., He is on 16 hours oxygen a day and unable to do much anymore. Thankfully still able to talk sensibly. Hernia can’t be operated on as too risky.
My problem is that we see different specialist for each issue but non of them seem to join up all his ailments.
G.P. access is patchy and we see someone different every time.
Am trying to get form for D.N.R. - it is now on his notes and we have a copy signed by a GP but am told that unless I can produce the original medics will have to resuscitate.
He is now 89 and getting very much more frail.
The Royal College of General Practitioners wrote some excellent guidelines about how to manage all carers.
I would suggest starting by reading this, and checking that everything recommended happens at your surgery.
Whether or not someone is terminally ill, many of the issues for a carer remain the same.
I would also suggest giving everyone links to the Signs of Dying websites on the internet. I found these incredibly helpful, I learned that mum wasn’t dying because she wasn’t eating enough, but couldn’t eat much because her body was so frail and couldn’t digest the food properly.
This simple fact was so useful to know.