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
Michael
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.
Michael
Rosemary
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
.
Just as lockdown started I had a long standing GP appointment.
I had originally tried to book an appointment re this way before lockdown…could not get an appointment with GP so I booked a telephone appointment.
I waited three weeks for telephone appointment to find she was rushed and would not discuss it over the phone
She told me to research the subject and I dhoukd make an appointment.
My appointment day came during first week of lockdown and I had a text cancelling appointment.
I asked receptionist if GP was going to phone instead and was told no!
Also my son has been on cahms waiting list for at least a year. I found an answer phone message left asking me to phone back.
I rang back and left a message for the person to phone me back and they never did .
We live in what is now called Independent Living For Later Life. Formerly Sheltered Housing.
The Manager is off sick
Our Borough Council and other Agencies have been simply wonderful in their offers of help for shopping etc if needed…
My husband is disabled with a permanent neuropathy of legs and back which renders walking quite hazardous for him. He also Has PMR.
Except for the morning Carer for 30 mins on 4 days and 45 on the other 3 to help him wash, shower etc, I am his full time Carer.
I have what is called trochanteric Bursitis which is increasingly painful of late.
I feel like a bad Carer because I am finding my husband of 52 years is becoming somewhat selfish and demanding because he is so bored. I cannot take him out in his wheelchair during the lockdown. All this is making me feel depressed then guilty at feeling depressed.
I try hard not to let him see how I feel. He is so uninterested at present in anything I say.
It would help if someone would reassure me that I’m not being a bad Carer/Wife
Thank-you
Of course you are not a bad carer or wife, you are human who would normally be enjoying a peaceful retirement.
Have you seen what I wrote this morning on the thread about the latest CUK report, Caring Behind Closed Doors?
I am increasingly concerned about all carers left to care 24/7 without any hope of respite, but especially pensioner carers like us.
It’s a mix bag really. Getting items from a chemist or getting hold of them is a nightmare as no one answers the phone, some time waiting in a queue to find out medicine is not ready for collection either because the prescriptions are not ready, not been sign for or waitting for medicine to come from suppliers and hold off in sending it out.
Gp service has been good and can’t really fault it in my area.
One think that concerns me is the lacks attitude of this virus in my local Hospital. I had to collect my mum from A&E and no one seems to think this virus is real. I know that people have died from the virus in that hospital but there does not seem to be any protocol over how to handle this virus and stop the spread.
There was no one on the door doing any checks unlike at a supermarket where limiting people in and out of the store but if they were need to visit. There was a sign saying one person only allowed in the department but there was exception like someone due to have a baby or if it was a child. There been very little or no advice on if you are a carer or Support worker would you be allowed to visit or how to collect someone or bring things in if needed. No once was I asked to put a mask on or gloves when I got there and also most of the nurses and doctors were huddle together and no social distance. Not even told or explain what was wrong with my mum, had to read the letter note paper work to get some idea. Half of the information that is being given out or used mainly applies to England than wales.
mike
Many thanks for your further comments in this topic. I will highlight your comments and experiences of using health services to our colleagues in the policy team.
Michael
My Mum suffered severe Strokes May 2012, which not only left her disabled; but with various health issues, including Dementia. Which is now impacting her massively, as she has deteriorated considerably, as she it’s affecting her ability to eat; was weighed 2014, was 14 stone. Last weighed in A&E after further mini-Strokes May 2018, was 10 stone. Also coz of the Dementia, my Mum has been bed bound the past 3 years, unable to take meds and is regularly aggressive with her Domiciliary Carers. I have all this time tried getting NHS CHC in place, but all professionals involved resist my involvement; even though the NHS CHC Guidelines state they’re to support me support my Mum, and the NHS Constitution is clear about family involvement; I have been repeatedly over-ruled for them to all insist my Mum has ‘social care’ needs, rather than the reality of complex health needs in their focus in forcing my Mum to pay for all her care; even though she has 2 Carers 4 times a day as there is a very large care package in place.
I have also tried asking the support of my Mum’s GP Surgery over the last 3 years. I’ve had to constantly speak with the Practice Manager, to no avail they’re too busy. I tried asking 2 GPs supposedly iinvolved in my Mum’s care, for an updated Mental Capacity Assessment for my Mum; I have been given the run around by both GPs, to the extent my Mum has sent a letter of Complaint, that has still not been responded to in writing as per NHS Complaints procedure. The letter was sent out around 3 months ago, after a month of no response (when there should have been a response after 5 days); I spoke to the Surgery Manager…who said she’d phone me ‘at the end of the week’; I asked for her to send a letter out, as per NHS Complaints procedures; nothing has been received. I have phoned again, and again; still nothing. I have been trying to get Advocacy support dealing with this, but they are proving just as difficult as the professionals I’m having difficult with.
Also I read on here that Carers are supposed to get support from their own GP, which has never been the case with my situation; even though I am long-term sickness with Stress, Panic, Anxiety and Depression.
The past few weeks, I have phoned my own GP Surgery about my very painful feet. The first time the GP dismissed it as Plantar Fasciitis and that ‘there’s no cure’, and to apply analgesic cream; when I asked for an urgent referral to the Podiatry Service. The 2nd female GP told me to phone back in ‘a couple of weeks’ - when I explained how bad the pain is, in needing an urgent referral to the Podiatry Service. Last week was when I tried to arrange a phone consultation with this female, she wasn’t in. So I agreed to speak on the phone with another GP (who has supported me in the past with ESA application support for being on long-term sickness); who was very unhelpful to the point of me having to put the phone down as he wasn’t listening to anything I said. So I phoned to speak to the Surgery Manager about everything; her response when I mentioned the unhelpful GP mentioned that even when the Surgery does open, they’d prioritize patients with Coronavirus symptoms; was to ‘phone back in 2 weeks’.
So I phoned to check the situation with the Podiatry Service, who said they are taking urgent referrals, and that I needed to ask my GP for an urgent referral with how I was describing my painful feet. So I tried phoning my GP Surgery to speak with the Practice Manager again, only to be told the unhelpful GP would phone me back - which I wasn’t given any choice about. When he did, he still over-rode the phoned consultation, even raised his voice and interrupted me when I was trying to explain again how very painful my feet were; only for him to put the phone down.
So I phoned the Podiatry Service again, where they said there was no other way I could be referred, but through my GP. But they did offer to take my details for one of the Podiatrists to phone me back to discuss matters; which was on Monday. Which they did, and they said I needed to have a thorough examination + discussion of my feet with a GP. As it could be Tendinitis or Arthritis, and that any treatment would be dependent on if I was over-weight - which I may be slightly; so now that may discriminate against me accessing much needed health care.
I did phone the GP Surgery again, and asked for the Practice Manager to phone me back, as on my notes the unhelpful GP actually put down that I was going to phone the Surgery back ‘in 3 months time’ about my painful feet - which I was shocked about, as I only stated it as a question in trying to ascertain how long I needed to leave it with all this lockdown situation.
I have been having problems with my GP Surgery for years. When I mentioned this to a female GP some years ago, the response I got was ‘nobody’s stopping you going elsewhere’. I shouldn’t have to change GP Surgery, coz they won’t support me with my health when they have a duty of care to; as well as the fact that this Surgery is the closest one to where I live and more accessible to get to.
I am very dismayed at how I have been treated by the GPs at my Surgery. As a very long time ago, one of the other female GPs (who I had trusted) dismissed my severe stomach pain down to ‘stress’ when I asked for a scan; as all the research I did indicated it might be Endometriosis. Some years later and after examinations for a totally different thing, it was what I suspected all along; Endometriosis.
I just put it down to the fact I am stigmatized/labelled coz of my Mental Health, like I don’t have a brain to deserve being treated as a Human Being. I’d hoped with them knowing I am a Carer for my Mum things might have improved - even though I discovered through speaking with a legal advisor; that both my Mum’s GP Surgery and my own get paid to support me as me being a Carer, but the reality is very far from that…they’re way too busy to care.
It is very disheartening and demoralizing I am denied basic Human Rights. What sort of a world do we live in, when we can’t be afforded any level of respect, when we’re under enough pressures as family Carers juggling a myriad of things for our loved ones? I have a duty to my Mum, not to flawed systems; where all professionals involved get hansomely paid. I live for my Mum; otherwise life ain’t worth it.
Butterfly
Sorry you are having so many issues with your Gp, I am having similar issues, the lack of understanding of care and Social Services.
My GP had said that I am being obstructive and difficult, I should work with social services and they will help me.
After years of fighting social services I was discharged with no help or support.
I live on an estate where there are a lot of ill/disabled/elderly, unpaid carers are run ragged not just looking after their own relatives, helping friends, neighbours whose services has been cut and cut.
Surely it would make sense to prioratise support to these unpaid carers who are dealing with multiple issues/multiple carees.
But Social services insist that I am mentally ill therefore its the GP to sort it out, I am piggy in the middle.
If my Mental illness (depression and anxiety due to caring) was sorted out, then I could care 24/7/365, no breaks, no pay and Social services wouldn’t have to do anything.
The Gp just doesn’t realise the cuts that social services have done, they have cut 90 per cent of services, shopping, cleaning, cooking proper meals, emergency care, night care.
And not just Social Services, issues with the GP, disabled transport, prescriptions, house support, bills, debts, equipment issues, emotional and practical support.
And according to Social Services it is up to the GP and mental health services to sort out.
As Bowlinbun says how can you cope with the frustrations and the lack of control in your life when you are constantly left sorting out issues with no support at all, you are bound to be fed up and depressed.
I had an advocate writing to all concerned, that was years ago, still waiting for a reply, been through complaints etc got nowhere.
I have on the suggestion of another forum member been looking up other GP surgerys, one has a mental health link worker attached to the practise, another claims to help and support unpaid carers.
Your GP surgery is convenient but is it worth looking see if others are unpaid carer friendly.
There was one nice GP who did understand about caring (couldn’t do anything) but she left shortly after.
The GP should according to guidelines prioritise and make it easier for unpaid carers, should consider their health, health checks, unpaid carer help support and guidance.
I think GP surgerys are just too busy, short of staff, bogged down with red tape and regulations to have the time to think about unpaid carers.
You shouldn’t have to change GP surgerys but maybe some fresh blood, a new GP team to look at, listen and understand the issues.
I am strongly tempted to change.
Plantar Fasciitis is very painful but can be managed, foot exercises and inserts can help, can you see a private foot clinic? Mine charged me £30 , gave me a lot of info and advice, and what inserts to buy from the local chemist. Send the GP the bill.
If nothing else your local chemist might be able to advise, chemists do go through a lot of training, some inserts might be better than nothing.
It is such a load of rubbish this we have to be referred, why, we have sore feet and need to see a professional, so much paper work, red tape, form filling.
Some services we can refer ourselves to them, some the GP can’t refer, some We cannot refer ourselfs, we are dependent on a Gp that may have never met us before, who makes up these ridiculous rules?
One of my carees has an artificial limb, he was taken off the list for the local artificial limbs and appliances clinic, as he had not attended an appointment.
He had to see the GP to be rerefered to the clinic, if you have an artificial limb you need to see this clinic for life, again how ridiculous to be taken off the list. Was told its to deal with timewasters who make appointments and don’t turn up.
These people and organisations are paid millions to make our lifes more difficult.
Butterfly, I’m sorry you re going through all of this. Some shoes have built in arch supports, and there are inserts as Londonbound said.
I wanted to emphasize a point to Michael that, even given that people with coronavirus symptoms require prompt attention, that should not be at the disreguard of those with other serious painful conditions…
Thanks for your further posts.
butterfly68 and Londonbound, I’m sorry to hear that you’ve had difficulties with your GPs for quite a long time.
I’ve spoken with our policy team this morning in relation to Rosemary’s point. As the NHS is encouraging people to continue to access other health services during the coronavirus crisis, in the coming couple of weeks it would be helpful to hear of how
easy or difficult you’ve found it to access services that are unrelated to coronavirus (for example, arranging and attending outpatient appointments or appointments for minor procedures).
Hearing about your experiences is really valuable and provides us with evidence to pass on to the NHS and the Government.
Michael