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Carers UK Forum • Your experiences of using health services - Page 2
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Re: Your experiences of using health services

Posted: Thu Apr 30, 2020 2:45 am
by Honey Badger
I'm unable to access any health services for myself at all now.

I had referrals to specialists which were booked last year, for this year, all have been cancelled, rheumatology for the psoriatic/rheumatoid arthritis and joint destruction taking place (pretty much everywhere).
My dental surgery (painfully planned due to care responsibilities) has been shelved, this can't be done outside of hospital.
I had a referral to neurology to suspicion of temporal lobe epilepsy via past head trauma (linked to why i need the dental) and this has also gone the way of the dodo.

I don't have pain medication for any of this stuff or health issues not mentioned I am having to just tolerate it

I've not actually seen a gp since last year, I was making some progress since switching to the practice, and then they were made to merge with another smaller practice (no warning, I only found out when turning up to a booked appointment) and that decent gp actually left the surgery shortly after. New practice staff are awful and have a reputation locally amongst both patients and professionals in other areas of health as being such.

I've had a couple messages to say they are working remotely due to covoid etc and thats about it.
Never mind trying to speak to the doctor you can't get past the receptionists who suddenly are armchair medical experts when they can't even spell properly and seem to get off on lording their status as gatekeepers over us great unwashed.

Good luck

Re: Your experiences of using health services

Posted: Thu Apr 30, 2020 8:54 am
by Cloudygal
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 .

Re: Your experiences of using health services

Posted: Thu Apr 30, 2020 12:09 pm
by Amble_180612345
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

Re: Your experiences of using health services

Posted: Thu Apr 30, 2020 12:43 pm
by bowlingbun
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.

Re: Your experiences of using health services

Posted: Wed May 06, 2020 7:18 am
by Michael_1910123
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

Re: Your experiences of using health services

Posted: Wed May 06, 2020 12:52 pm
by Michael Carers UK
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

Re: Your experiences of using health services

Posted: Fri May 08, 2020 12:29 am
by butterfly68
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.

Re: Your experiences of using health services

Posted: Fri May 08, 2020 5:26 pm
by Londonbound
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.

Re: Your experiences of using health services

Posted: Sun May 10, 2020 7:17 pm
by Rosemary_1706
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..

Re: Your experiences of using health services

Posted: Mon May 11, 2020 12:45 pm
by Michael Carers UK
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