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what I as a carer want/ need from the GPs - Carers UK Forum

what I as a carer want/ need from the GPs

For issues specific to caring for someone with mental ill health.
I have recently changed my GP. Previously, many years ago, what I thought was actually a very good Dr wrongly wrote down that, I had used Street drugs in my 20s, and at the time I saw her in my 30s was 'injecting heroin'. Which I wasn't. I was in a terrible state, because depressed, could not make anyone marry me, felt a failure, etc et cetera. Terrible state, made worse by visit to Tavistock Inst. At the time my son must have been about 8. Now this poor son is in secure unit, graduated therefrom Oxford University, about 20 years ago. After 30 or 40 years hindsight, I have concluded there exists an unrecognised disease of' interferingitis.' that GP was a caring GP, but TOO caring and assumed I was worse than I actually was, panicked and wrote down stuff that was wrong. As well as 'emotional reaction to stress causing underperformance' . I suffer from this, but it's a bit bloody much if the GPs suffer from it as well and cause me further damage. not to speak of psychiatrists in mental health system who have made my son progressively worse, at a cost of hundreds of thousands of pounds.

That GP retired. Changed practice did not like the new ones, they were not sympathetic, wouldn't allow me to be depressed, with dreadful situation of my son. Few years down the line because I wouldn't agree with a Section, some bright spark from mental health chose to phone GP and tell them I might be 'hearing voices'. Wrong again, absolutely traumatised. Tried to complain, but got nowhere. The stupid GP kept telling me he'didn't know who had phoned'. Later transpired it was who I had suspected, a CPN bullying me to agree to my son sectioning. cowardly GP had panicked, lied to get his way out of a difficult situation.

I'm trying to correct the error in my records. It is extremely difficult, getting sent round in circles. No one wants to take responsibility. Last Christmas, I really didn't want to live, my son, banged up in secure unit, it's just going on and on and on, forced injections more and more different pills nothing works, it's as if he's being continuously tortured, the place is like a concentration camp with 30 foot high cages they smoke in, not not allowed out of horrible suffocating building all they are worried about is if somebody escapes what they mightdo.

last Christmas , I felt completely abandoned, desolate. got through it without suicide attempt, LOL, by doing a laughter yoga session for a local homeless group. they thanked me so profusely. Oh, if only they had known, it was them doing me a favour. they wouldn't even let my son out for Christmas, he's banged up some 50 miles away. He is by the way, not violent, just refuses to cooperate/talk to his captors.

Recently visited new GP, she offered me: 'antidepressants' 'counselling'. I've tried these, and they just make me worse. Counselling and carers groups are dangerous in that I have awful traumatic stories we playing over and over in my mind- what do I get back - more awful stories/regurgitating my own not rocket science that this makes me feel worse, bog standard NLP.

What I want from the GP: answer to questions 1. 'why am I not dead ?' Have not slept properly. for 20 years, constant misery and anger. should have had stroke or heart attack.maybe it's just random genetics.

2. how do you ever ever ever live with the GUILT of not being able to SAVE your relative. ???? I couldn't save my mother who suffered from the most horrendous arthritis
20 years in absolute misery. Haven't managed to save my son. He is living a meaningless existence in the most dreadful of misery. The GP must know SOMETHING about this, she's dealing with God knows how many hopeless cases every day all day. Problem is that she doesn't know HOW she does it. If HOW the GP copes with all this misery and death could be modelled, that would be something very useful to me.

I think this is an interesting and valid point - I have a defect of reacting emotionally to stress- I can't see me lasting even a couple of hours working as a GP. I'm just not the right person to be saddled with terminal psychiatric case. But maybe the GP has some skills which would help me. Only thing is, she doesn't know HOW she does it. This would be a lot better than trying to force unwanted, and proved to not work, treatments on me without thinking.
Hi Anita, welcome to the forum. If your records are incorrect, and they are computerised, they are covered by the Data Protection Act, regulated by the Information Commissioner. I'm appalled at your situation, however when I read what was written in the Social Services file on me, I found all manner of incorrect statements. Unfortunately, since reading them, my brother and mother have both died, so I haven't had time yet to get them amended, but I shall.
The difference between the GP and you is that the GP does not have an emotional attachment to the patient, whereas for you, the patient (your son) is part of you. I too have quite an emotional response to stress, which people love to point out to me and tell me is a weakness. I have begun to enjoy asking in return how would they feel if somebody was digging and twisting a knife into their loved one in front of their eyes, knowing there was nothing they could do about it! A bit extreme, but that is how helpless I feel at times, watching my son and knowing there is not an awful lot I can do to help him.

I have a friend who is in a similar position to us. She is very plain spoken, and calls this frame of mind "holding on to the bat". We beat ourselves up for stuff we have no control over. She never judges me for doing it, but every once in a while, she insists we go for a walk on the beach, she lets me kick and scream and cry, and then we leave the "bat" there. She also calls my old life "the skip". Everything went in there when my son became ill. Sometimes, if things aren't too bad, I climb back into the skip and retrieve something small - maybe a call to an old colleague, or a date night with my husband. Quite often it is only temporary, and things end up back in the skip quite quickly, but hey, it's still there if I get the chance to dip back into it.

Life is tough, and quite often I feel miserable and a failure. But I will go out kicking and screaming. My emotional response is me. This is how I am. It does not make me a bad person. I know this because I know deep down I want to make life better for other people. I don't want them to feel as sad as I do.

You are not alone Anita. It sucks, but we can do it xx
Hi Anita,
I agree wholeheartedly with Steph; the GP is not emotionally involved with her patients whereas us carers are emotionally involved. Nothing is more tiring, exhausting and depressing than feeling powerless to help someone we love.

Definitely follow BB advice and see where it takes you.

CBT &/or may be worth a try for you, if you haven't tried them all ready, they might just give you the tools to switch off the guilt occasionally especially when your negative thoughts are spiralling.

Also, how about running a weekly laughter yoga class?! You could offer to rub it at your local carers centre or community centre etc

As for your poor son, does he have an advocate who specialises in mental health? He is entitled to one. Others on here with experience of mental health will hopefully have more suggestions.

Melly1
thank you all for your replies. Yes I realise on the one hand I might be beating myself up uselessly but, at the same time I have not always acted as I wanted to act, got overcome by emotion and 'lost it'.
One thing that HAS been achieved is that now patients are allowed to see their records. At the time wrong information was written about me some 30 years ago, I have a vivid memory of once sitting in doctor's waiting room holding my record file, to look after while waiting for Dr, by receptionists - I peeked in it , and they went ballistic, as if I'd broken the Official Secrets Act by wanting to read my own details. Looking back, wish I'd grabbed it and run out of the door !!!!!

It will probably take some time but maybe in the future, patients will check their records in the same way as they check their bank accounts for errors. It is appalling how universal mistakes seem to be.

My son refuses to see advocate- does this mean he has brought all this on his own head ? I recently wrote a really depressing poem about my life and his life- harking back to Baudelaire and Mallarme which I studied in my youth. Did I start out with depressed mindset ? Hence am the cause of all this ? Who knows.

One thing interesting is : http://developingopendialogue.com/?page_id=16 and another is http://mindapples.org/

a memorable sentence I got from Mindapples was "you will forget what people said, you will forget what they did, they you will remember how they made you FEEL".

One notable thing about all types of therapy that I've been offered is that it makes me feel like *****. Common sense would say, if something makes you feel bad, avoid it. Seems to me all psychiatry – diagnosis has on offer, is doom of one sort or another. So I joined an anti- psychiatry organisation - what happened - they made me feel like ****too. A bit dangerous to do too much voluntary work, I find I try to hard to improve people, it somehow backfires and they end up hating me. I have a horrible suspicion that helping people is essentially a very dangerous thing to do, empathic people can get stuck in that mode and end up doing more harm than good, this is the reason mental health treatment seems to be so ineffective ?
The trouble with counselling is that so many people think they are doing it well. So few are!!! I have a lovely counsellor, sadly costing £25 per hour, but she held my hand emotionally as mum was dying. I could offload all sorts of things about my relations who wound me up, talk about the relations I loved and missed now they have passed away, all the time dealing with just one issue and laying it to rest before dealing with another. So if they are making you feel like rubbish they are not doing it properly. Unfortunately a client in meltdown is unlikely to tell them, so they carry on. Maybe a self help book might help you? I went into the bookshop soon after my husband died, and chose the one which seemed to resonate with me most. Actually it was more about divorce and starting again than bereavement, but in reality there's not a huge amount of difference.
Anita,

I think it is just a matter of balance and accepting who you are, even if you don't like all of yourself. It is the same with volunteering - you don't do it to change people, but to help them achieve what they want and need to achieve. Obviously it isn't for everyone, but I take heart in the fact that at least I am trying to do some good.

As for counselling and therapy, I think it depends on your mindset and and what you want to take from it. If you are expecting someone else to "fix" you, it's never going to work. The change has to come from inside you because you want it. And quite often it does feel awful to begin with. But so does going on a diet, or starting at the gym, or walking on a sprained ankle. Sometimes you have to go through the hurt in order to get something out the other side. I used to bottle stuff up due to my fear of having an overly-emotional response if I let it out. Did it help? No - the emotions just used to overspill at inappropriate times. Now, I cry when I need to, I rant on forums, I swear at my hubby and generally let it out in smaller chunks. Have I changed? No. Have I changed how I manage myself? Yes.

I admit that as a family we are quite lucky with the mental health service we have in our area. We are part of the Open Dialogue pilot in the UK, and although it isn't in full swing, we have certainly seen the attitudes and values of the CPNs involved develop to become more holistic. Families are encouraged to become part of the solution, but are not expected to cope alone. As an example, my son is currently in hospital, but the CPN called me on Saturday to see how I was coping and if there was anything the team could do to help us. The clients are also encouraged to develop an identity that is not diagnosis-centric - I quite often hear the phrase "don't let your diagnosis/illness define you". Overall, it is about honesty and openness, and it only works if everyone involved is true to themselves. sometimes that doesn't feel great, but if we run away from that, nothing ever gets resolved.
oh wow, Open Dialogue, that is fantastic and so interesting, what is your area ? If only my son and me had had something like that. I've been to a few of their seminars in London. Suggested it to the psychiatrist, but I don't think he got it- said he was going to send an OD psychologist,to see my son, my son of course refused. he hates everything and everybody to do with psychiatry, because they've told him only bad things about himself/forced unwanted treatments on him. I don't think the psychiatrist realises that Open Dialogue is meant to involve everyone, and is a team effort. The best my area can do for me is a Mindfulness course, well better than sitting in a little room swapping horror stories as they previously provided in lieu of help ,but I do have reservations about it- 2 much telling people what to do, expecting a lot of them. not just me, but everyone in the course seems to be struggling with the volumes of stuff we are meant to practice, and don't. At the moment no news of my son, finding it so hard not to imagine the worst. I went to a lot of trouble to get him a phone, he has either lost it, or pretends to have lost it, so no communication possible. he's 50 miles away, so stressful trying to get to him through the hospital switchboard I have given up. Not really getting any support at all, generally I don't tell people he is in a secure unit because they always think he's done something dreadful//is something dreadful wrong with me. So I haven't confided in the Mindfulness group their problems are not mental, just physical illnesses of relatives. Caught in a Kafkaesque nightmare, attempting to get a factual mistake changed of my medical record. GPs seem very loath to get involved. This mistake caused me to lose a place in sheltered housing. I feel I would not be so depressed, if I did not have to be on my own so much.
We are in Kent. We are very lucky to have an amazing head of Early Intervention, who knows what it is like to be a carer, and she is massively influential. She gets the carers involved in all aspects of the service - we have regular conferences where we get to tell them what they are doing right and wrong, she is there by our side to support us with complaints about hospitals and treatment teams, and she is very proactive about looking at new solutions (hence the open dialogue).

I understand where you are coming from with not sharing your son's condition with people. One very old and close friend is petrified of my son, to the point where she will no longer talk to me, and other people who I thought were my friends now just whisper behind my back about me, and don't know how to talk to me, which makes it pretty awkward. As much as carers meetings can turn into a "we have it worse than you" competition, I stuck them out and have found a couple of people I have "clicked" with during them, who I now see independently of any formal arrangement. Because they have similar family issues, there is no awkwardness, and we can give each other realistic advice if we have a problem, but more than that, we know that we are just normal people trying to go about our lives, so more often than not, we just have a normal chit chat. It has definitely stopped me feeling like I am so isolated.

My son also has an issue with using his phone whilst he is in hospital - his paranoia is just too bad. Of course it doesn't help that they are not allowed devices that have cameras on the ward, so he has to have it kept in a locker in the reception area, and in order to use it, he has to be escorted out and supervised, which is basically impossible as they are so understaffed. Is there anyway you could make a regular time to go visit him, even if it is just once a fortnight? I know it makes me feel better to see him, even though it is a pain in the backside to get there and we have to faff with the process of risk assessment each time just so I can be in a room on my own with him.

I am sorry your GP is such an idiot. So often people just don't see the stress that, what they perceive as small things, have on us when we are so overwhelmed with other issues in our lives. If your medical records being wrong are causing you to miss out on things that you think will help you, such as the sheltered accommodation, why don't you write it all down before you see them. That way, you will be in control. If you have had time and space to get it all on paper, you can just plonk it on them and you won't have to worry about your emotions taking over when you try to say it out loud. Really stress how much stress this is causing you and maybe point out that you would not need to see them as often if you weren't this stressed (that should prick their interest). If you could get your records sorted, maybe you will feel in a stronger and better place. Never underestimate what a boost to your self-esteem a little victory can be ;)