Further to my ongoing saga with my mam’s health care; the pattern that’s emerging is disturbing in my opinion. I don’t know if anyone else has encountered this, but the support teams from the NHS – act in an adversarial manner towards us family members. I feel that I’m the villain in the plot - who’s making life hard for the Psychosis Team and the Care Manager/Coordinator.
It’s as if I’m making things more difficult for these case-workers for an otherwise – well-handled case of Schizophrenia. I’m firing off email after email to the NHS-Trust complaints channels; PALs and even the Parliamentary Health Ombudsman. All of which are troublesome; more smoke in the eyes of those reading my emails and less fire that can be treated as criminal negligence. In other words – I’m just a complaining so-and-so – who should just let the teams get on with their highly skilled profession.
If only the truth of a “highly professional team who are doing their best” is demonstrated in reality. The Police is now constantly being called-out to address may mam’s alarming cries for help; at times to coach her back to her bungalow. Lately – she’s been seen and reported roaming the street next to her estate at 1am in the morning – waiting for a Taxi. The Police rang me and asked if I can come to her bungalow to assist. So I came – with duvet in hand – to sleep overnight. What a farce; and the joke is not getting funnier.
The sad truth is – I’m getting more sympathy from the Police men and women – than the so-called Mental Health teams of the NHS. The “Care” experts are utterly insensitive to my feelings and treat me like some trouble maker…because I write stuff like this. Yet they are supposed to operate a standard called The Care Triangle; which requires the Carer (me), The Psychosis Team and the Patient to work together. But as things stand, the Psychosis Team and my Mam are the only ones making the important decisions – whilst I’m utterly out of their decision-making process.
I suppose – if I was a scoundrel who is only after my mam’s finances, who is hoping to get a windfall inheritance out of her demise then the system is perfect for keeping leeches like me at bay. But as it stands, I’m the only relative in this country she has, since we are both 1st Gen Immigrants. The NHS who prides itself as caring to the point of being overworked – in this instance – treats me like a whining knit-picker. No! I just want 21st Century Medical Science to be practiced and a bit Psychiatric expertise to be put on display for my mam’s benefit. This has been going on since Feb 2018; you’d think my mam’s problem is a flaming mysterious disease – unknown and utterly beyond the reach of anti-psychotic medication.
A Social Worker friend says – she’s showing signs of Dementia; which are money-hoarding, volatile temper and an urge to get taxis everywhere. But can I get it confirmed by the experts? No. They are scratching their heads; attributing all of it to Schizophrenia. All the while the Police keeps writing-up report after report for the team involved – which I think – they are just ignoring! And I’m being made to feel I’m the trouble maker? Who’s wasting Police time? Not me, or my helpless mother, that’s for sure!
Unfortunately many NHS organisations seem to neglect the importance of the carer’s role. Not speaking from experience, but have heard several recounts.
As hard as it is, keep pushing! You’re looking out for your mam and going above and beyond. It must be very demoralising when you’re constantly fighting a battle when you’re really trying to work to the same goal.
Here to offer an ear if you need it.
Victor, dementia was my first thought when I read your post.
Have you asked the GP to refer mum to an appropriate clinic (might be called a Memory Clinic) for an assessment? Apparently it can be confirmed with a scan.
How old is mum?
I have had many problems with the NHS, having had TEN carees in total, enough to write a book on the subject.
One week, I had father in law here one night after he’d had an examination which we were told could only be done if he had “someone” with him overnight. On complaining about this later, I found that if he had been the first patient, it would have been fine for him to sleep alone!
Next day, disabled mum had to go to a different hospital for a procedure. She thought that she was staying in overnight, they didn’t tell her it was a day hospital ward. She would be discharged with her arm in a sling, so would be unable to use her Zimmer frame. Somehow, no one noticed that she was almost bent double. When I rang the ward later, I was told she would be going home in an hour and “YOU have to look after her!” No, my disabled son was coming home that night as I we were going away the following day to an event planned a year in advance!
I rang the CEO of the hospital, made a formal complaint, CEO arranged an overnight stay and carers 3 times a day.
She’s just turned 75.
What I can’t understand is the unwillingness to take action in her behalf; to do the right thing for her. SHE has to make the decisions as to what she wants to happen. So they are allowing a mentally ill person to decide their own fate. This is like allowing a child to decide what time to go to bed or what food to eat. It’s ludicrous - “consent-based” insanity-care at work.
My mam is acting like a child; she has tea parties with invisible friends and she has temper tantrums. All of which are taken as part and parcel of her illness. Yet - the Police, the Neighbors and Friends can’t get over the lack of action on the NHS’ part. WHY!!!
I agree, what you describe is utter nonsense. The more you describe, the more it sounds like dementia.
I would suggest writing to the GP Practice Manager, explaining the symptoms you have described here, and ask for action to be taken. Clearly mum is at risk, and it might just concentrate their minds to say that if anything happens to her as the result of their negligence, you will have no hesitation in taking further action.
You can also complain to the CCCG - the Clinical Care Commissioning Group of your local NHS. You could also tell the Practice Manager that unless you hear from him within 14 days you intend to contact them.
Victor, I fully understand your situation, in my case I can’t get any help from NH S mums behaviour to me is appalling and similar to your mum, agitation, screaming, but if I ask mental health they say she has dementia, if I ask dementia they say no diagnosis. All left to me and my personal life is a mess, I have chest pains and sleepless nights trying to sort everything out. Where will it end? No statutory agency wants to know as mum is so difficult.
Have you or any family member got power of attorney for health? Has your mum signed any papers allowing the NHS to talk to you about her mental health condition? Is the NHS’s reluctance to work with you a privacy, data protection issue, I wonder?
Hi rosemary, the issue is mums behaviour is deemed too challenging and as I have done it for free for years it saves their budget. That’s the awful truth even though I do have power of attorney they ignore it. Her GP has told her to carry on and won’t even prescribe anything as mum refuses to take anything that makes her calm!
Ok for them they don’t get the calls at 4am screaming and demanding attention.
Karen, record those calls and share them with the GP!
Rest assured , readers … our very own CUK are on to this continuing problem of us being left out of the loop.
No problem with the recommendations , just one small snag … is anyone listening … then prepared to act ?
https://www.carersuk.org/for-professionals/policy/policy-library/carers-uk-consultation-response-to-nhs-england-implementing-the-nhs-long-term-plan-proposals-for-possible-changes-to-legislation
( A little odd … in the PROFESSIONALS section … no corresponding link for us to discover just by chance ? )
Interesting, written by someone called John Perryman, I’ve never heard of him! Demonstrates yet again the widening chasm between carers and those working for us in Carers UK Head Office.
John Perryman
Senior Policy and Public Affairs Officer at Carers UK
Sheffield, United Kingdom
Nonprofit Organization Management
( No trace of said gentleman in " The Team " on the forum … aka a Red. )
Only going by mental healthcare communication issues in California, although I fully recognise I’m not in California now!
Over here it seemed like the nhs and LA were
all too quick to assume I would be there for mum but conveniently for them, I was always the last person to be told. Let allone be involved in any discharge planning, as their “CarersCharter” advertised.
Chris and BB: time for the forum to arrange an online session with the senior policy guru?
A post worthy of being added to our GUEST SPEAKER campaign … the first , so far , aimed directly at CUK.
Now done !
Agreed, I think we would all benefit from working together rather than being distant.
Be interesting to monitor the meeting of professionals … one on paper , the others from CarerLand.
Hi bowling bun, I have shared this with GP and social work team, they just shrug their shoulders, no one interested but now mum is in hospital since yesterday I am expecting a demand that I free up the bed and get her home Vicious circle never ending game and staff don’t listen to me, they just want the bed back.
Absolutely exhausted and suffering in personal life, but agencies don’t care about carers, we are invisible and cheap labour, in my case free as I don’t claim carers allowance and never will
Karan, you CANNOT be forced to care.