primary care standard: improving the welbeing of carers

[Michaeltm]

Hi, I am a carer ambassador and I am in the process of collaborating with the ccg on:
1. a primary care standard on carers
2. hospital carer strategy:

I will appreciate any ideas on the main themes to be included in the standard or strategy!

Thanks!
Mike

[Henrietta]

Hi and good luck wth the challenge!

Good Communication-


Signposting services
Advising on available Benefits
Advising on equipment post discharge
Keeping carer informed of hospital tests and results (respecting patients confidentiality where appropriate)
Advising on support available- groups, internet, GP
Adequately plan discharge

and provide them with cups of tea- every now and then
provide parking permits if prolonged stay in hospital
Allow appointment when you can chat to professional to discuss instead of turning up daily hoping to catch Dr or Sisiter

[Simon_1501]

I would like to see more help for people how are carers how have learning disabilities

1. Easy Read information : No jargon
2. Double appointments at doctors : Single appointments not good
3. NHS health checks : This could be improved
4. Telephone buddy scheme : Lonely, Isalated, Friends.
5. Mybe offered a sandwich at hospital : We can get neglected
6. Lack of communication : Come to the direct person
7. Respect and Dignity : We are all equally
8. Transport to and from hospital :
9. Reviews every six months

Thanks Simon

[Melly1]

Hi Michael,
I had to look up CCG = clinical commissioning groups

There is a lot to be improved upon!

I agree with Henrietta, plus:

Off the top of my head:
And not in any particular order ...
For professionals to have training in autism ( and I dont mean a tokenistic 1 hour lecture)
For professionals to understand how patients with ASD can present differently well unwell
For surgeries, clinics and hospitals to have a designated waiting area for those who can't cope with the bustle of the ordinary one (e.g. Those with ASD and dementia)
For professionals to remember carers really DO know their caree best - so listen to us
For professionals not to be patronising!

Hospital stays are a NIGHTMARE
Many patients with ASD find a hospital stay very stressful. A single room helps.
Ward staff to READ and become familiar with the patients communication passport/ hospital book etc
An autism champion on each ward would help, someone with additional training and expertise a bit like is supposed to happen for dementia patients
Meals that meet dietary requirements

My caree can't stay in hospital alone, the staff don't know how to communicate with him, manage his meds or contain his anxiety and behaviour. I'm expected to stay with him, but am a single carer - the ward expect me to manage without food, drink or sleep for days and nights at a time. Where this is necessary, protocol needs to be in place as on a children's ward - camp bed, blankets and pillows, drinks and snacks or trained, experienced 1:1 care!!!

No fuss and access to magic cream for essential injections/ blood tests and liquid paracetamol, even if it is an adult ward

Melly1

[jacqueline_15052]

But when complex behaviours are involved there is no provision my son needed to see CAMHS before they could let him go home so I had to stay with him at all times, I ended up taking him with me to the hospital restaurant for all his meals with me and they said if I left they would tell social services I was uncooperative so I waited for an intern from CAMHS who made it clear she could only take notes and give no advice or change any meds so it was a totally unnecessary and a total waste of time, if you have children with challenging conditions you are treated like scum, they should treat us all equally, but there is far too much prejudice, we have enough to cope with daily without the added stresses

[Michaeltm]

Thanks everyone for your comments, it was helpful and valuable in all levels. Thanks!

[bowlingbun]

My mum was seriously disabled, often in hospital. I'm the nearest relative, constantly frustrated by the lack of co operation. It's OK if I agree with everything that's going on, but as soon as I say something won't work, isn't appropriate, the staff concerned develop instant selective deafness. Mum's care has involved two different areas, south east and south west England, as she lives right on the border. The hospitals can't/won't speak to each other, so I was the only person who knew mum's medical history, but no one wanted to listen. There are already written policies for carers for hospitals, I'm sure CUK have one for you to copy, but I doubt anyone will listen to you or take notice of it I'm afraid. On one occasion a hospital was going to discharge mum from a carpal tunnel op with no arrangements for her after care. Is it so difficult for them to realise that someone using a zimmer frame couldn't use it if their arm was in a sling!?!? On another occasion, the hospital were insistent that mum was fit for discharge, when she clearly wasn't. They sent a hospital bed to mum's house. I didn't go round to let it in. When asked why? I said she's not for discharge. I was then told that they knew mum had a key to her home in her purse. If necessary, they'd let the bed, and mum in, themselves. In response, I said they didn't know mum had an inner and outer front door. She only had a key to the outer door, and I'd make certain the inner door was locked at all times from then on. Days later, mum was vomiting blood, and after further complications, never went home again before she died. I knew my mum better than anyone else. Why wouldn't anyone listen to me? Sometimes, I think my middle names should be "Attila the Hun" but why should I have to keep fighting? As an over 60 carer, I wasn't even entitled to Carers Allowance!