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Your experiences of using health services - Carers UK Forum

Your experiences of using health services

Guidance on coronavirus and a place to share concerns and support
Dear Carers UK members

We are looking for information on your experiences of using health services during the coronavirus outbreak.

Some health services are being proactive and some carers are finding telephone consultations easier. We also want to understand any challenges you may be facing or concerns you have. Please share any positive experiences, challenges you have faced or concerns.

Any experiences you can share with us will be really appreciated.

Thanks very much

Hiya Michael, Funny you've mentioned this as I have written this below, in my diary/log.

Yesterday I emailed my M.P. to ensure he knows that my son has received no contact from any professional on his 117 aftercare team. I pointed out my son is yet to hear anything after being registered on the Government’s vulnerable website.

It has been almost 5 weeks of lockdown and to realise no professional is taking any responsibility to make contact I think it is pretty disgusting. It is also very obvious the lack of consideration that is coming directly due to the fact my son lacks capacity in his own right and this is why no contact or concern has been shown or made, by the ‘professionals’ supposed to be allocated to his case.

It’s truly awful to know, that there is a two-tier system at play, where people with full capacity are to be considered only and then contacted in order to offer help. While people like my son are not contacted at all, in 5 weeks of lockdown.

It doesn’t matter whether or not help is needed, because no professional is going to ask the question. Even when waged and allocated to cases.

It could be, that my son hasn’t been contacted deliberately.

I have to mention this, as it has been an ongoing situation that my son has been ignored for some considerable years, especially regarding his specialist needs and proper support for those needs. Like I have mentioned, my son is allocated to several professionals who aren’t playing ball. Yet are waged individuals.

When this is over, none of them need bother to contact me to arrange anything as I will be letting them know what they didn’t do for my son during a lockdown and that this was far from appropriate. What is the point of having professionals on my son’s case, who clearly don’t give a damn.

I have put the same mention, over to the so-called ‘allocated social workers’ manager and asked for a new allocation, on the basis of the displayed lack of interest in my son’s case already. I don’t see why I should gleefully accept such a person on my son’s case who is waged by the local authority for social work. Yet doesn’t work by that description towards my son’s case.

Same mention:

I would like to bring it to your attention that J’s allocated social worker hasn’t bothered contacting him, in the whole of the lockdown to even check he’s ok. Given J is on 117, I find this particularly bad. He has had no assistance from anywhere probably because he lacks capacity and is considered not important. I enrolled him to the government website as vulnerable, yet he’s had no assistance or contact from that.
Could you allocate a social worker in the future who is more caring? As it isn’t much use having one allocated who doesn’t give a damn about her client who is also my son.
Yours sincerely, Maine.

This ‘new’ team allocated, for my son’s 117 aftercare, have shown just how considerate they are going to be. With that said, and after the mockery shown to my son’s case, they should expect rejection and their organisations will need to allocate a new bunch.

This bunch is presently allocated, yet not active, and now they are never 'going ‘to be involved’.


I've had no contact about M either.

I wrote to the Service Manager about M's personal budget, 28 hours care short. I was just told the agency had no more capacity.
Hi Michael, There are already quite a few issues posted on the forum.

I have a couple of instances to share that may also be happening to others.

My consultant recommended both enrollment on a physiotherapy clinical trial and cbt. That was back last June. The physiotherapy clinical trial for functional neurological disorder has been put on hold, so I never started that. The cbt therapy sessions were supposed to be face to face, weekly. Those in house sessions were cancelled. First it was to be replaced by a phone consultation, but I started on a generic online program, "Silvercloud", reviewed weekly by a sponsor.

This program is so very generic with questions like `How do you feel when a stranger smiles at you on a bus?'! One size fits all probably suits nobody very well! It takes no account of my consultant's assessments , nor the background info I shared at two intake sessions. I did complain to the therapist who has offered me the possibility of video conference sessions via Zoom. He seems to be accommodating and that is good.

It is clear that I am having to speak up to get the treatment my consultant proposed. Considering I've already waited over 10 months, I do not need my intelligence insulted by totally inappropriate multiple chioce questions.

It makes me wonder just what remote palliative care by phone would entail, and how distressing and frustrating it would be for carer and carer alike.
hi for us it started in 1996 we met fell in love deceided to raise a family baby was born but what i was unaware of was my wife had bipolar disorder we didnt have a lot of parent classes my wife at the time was on a med called metronidazole which was causeing what looked like a empliciti fit when taking to the midwife at the time she said "NO SHE DIDNT HAVE THAT FIT"we was disbelieved by a health proffessional all though
metronidazole can cause what looks like a empliciti fit, my wife and baby was taken to hospital for care but at the hospital they wanted to take my wife to psychology mental health ward my wife didnt want to go so i was aloud to sleep by her , the next think was i was taken away by the police for no reason so they could take my wife to a ward but as i said it was my wife who said no .after my wife was settled in i was aloud to see her
i was visiting 3 times a day untill she came home , as the baby was in the hands of social services we was under 2 different solicators at the time when it came to the first day of court i found out that my wife had given up the baby without telling me , as you can imagine we had problems with bi polar my wife was kicking me hiting me at the time i was reacting back as i didnt really understand what was going on as time went past we had another baby in 2015 and again could not look after baby
but this time we both make the choice to give up baby , my wife mental state was still the same , my wife has been admitted under section 3 of mental health act before several times due to her illness so now what happens is that when she becomes violent i call the police as she can be manic and psychotic , when my wife had a pain in her tummy i took her to see out of hr doctor who said it was nothing more that acid indigestion ok we didnt think much to it as he gave her some meds , when we got home she was
violently sick a ambulance was called and taken to hospital all they done was a blood test that said she had gallstone pancreatitis and respiratory failure she was taken to icu , my mental health went up as you can imagine i was even looking at funeral costs as i didnt expect her to come home when i was upset i was taking to a dr who said to me as i suffer from chronic pain "GO HOME AND TAKE YOUR PAIN KILLERS " i said i have got lots of pain killers to take as he made me feel suicidal , i had no help at all from anyone
and i didnt know what was going to happen , i saw my wife 3 times a day and she said to me dont worry i am not going to die she went back to medical ward i explained to staff to watch out for her mental state and to tell me of any strange things she was doing , all though when i was seeing me my i was noticing a change in her again i told staff , they was not concerned they discharged her with in 6 days i called the police out twice due to violent
behaviour , again she was readmitted to hospital and mental health ward again i was seeing her 3 times a day untill she came home ,
as my wife and i suffer from infection due to underline conditions there was also issues when my wife had a infection and allthough was seen by out of hr dr , 5 ambulance service , the infection was seen as a viral infection untill she collapsed another ambulance was called and taken again to hospital blood test etc was done this time she had got , blood clot of her lung , water retention , she was admitted again and again i warned staff of her mental health now all though other paitents where calling for staff to help my wife they did not take any notice
as they saw it as her mental health , there was issues where she wanted the toilet staff did not take notice so she went all over the ward floor and said to staff i told you i needed to toilet , on visiting my wife again for 3 times a day i was noticing her ankle and foot was swollen we informed staff who again didnt take any notice my wife was discharged with a fractured ankle , i went through seap to compain about the hospital trust we really never was happy with the result , when she was discharged again she was violent towards me and again police was called readmitted for 4 months to mental health and again i was seening her for 3 times a day
untill she came home , there has been issue with care companys , adult social care , who treat you like crap and disbelieved you over a proffessionals so i was recording calls to and from home to catch out the issues whe was having adult social care would still not beleive us all though we have it on tape , there has been issues where care companys come in treat you like dirt , adult social care dont believe you all though you have it on cctv there has been issues when i made compaints it was investigated by adult social care and they said i did not let the carers in to help in the shower which is crap as we have the log books and cctv evidence but again adult social care dont believe !
and they wonder why i have issues with proffessionals , we have been together for 24 years my wife has a learning disability with bpd and other issues she cannot run a house hold by her self now we have covid 19 about every one is concerned how to help there loved ones through this but who is helping the carer involved , no one ! like me a have got osteoarthritis in my spine with nerve damage i am in pain every day i was on morphine and tramadol for 20 yrs i was told by msk for 3 yrs to stop the meds i went to my new dr surgery who said the same all though dr has tried different pain killer nothing seems to help so the only pain killer they will give me is paracetamol which dont help so every day i live in pain and still trying to do the best for my wife these issues with health services are not only going through covid 19 they have been happing all the time allso got issue from wellbeing lifeline about equipment that dont work properly including door alarm fools detector and unit box i have been on to them for 3 weeks its not good enough ! engeriner from life line just rang and admitted that the fools detector that my wife wears does not all ways detate a fall to the wearer so if you fall you have got the risk of serious problems in which we was not informed of this sort of problem which is a concern !
Thanks to everyone who has posted so far to share your experiences of health services during the coronavirus outbreak. Your quick responses are really appreciated and provide a helpful picture of what it's been like for carers in the past couple of months.

As Maine has pointed out, members have also shared their experiences of health services in other topics so we'll search for these. We'll also keep checking this topic in the coming days for further comments.

Functional Neurological Disorder, how do you get diagnosed and by whom?
Has been strongly suggested that my caree has this, through private sources but needs an NHS diagnosis.
And is having to pay for private therapy but not got bottomless pockets as regards to finance.

I did see the programme on the tv about the clinic in Birmingham and the specialist Physiotherapy needed for this condition.

Can you tell me more, would be very helpful to me and other members of this forum

Thank you in advance.

Of course nothing will happen until this corona is over.
As carers saving the state a fortune, we should have a right to free face to face counselling. We need counselling because we are carers.
I would also like it compulsory that every surgery has Carers Champion. I had to give my surgery,and my son's surgery copies of the RCGP Carers policies!!!!
we are having issues with well being life line and equipment problems we have reported it to adult social care and local mp office due to well being are reluctant to come out due to covid 19