Today I write in shock and with dread.
I have written previously about the eating disorder within our family but I have not given details whilst we are fighting for treatment. I must change this policy now. We fight on, with the help of an excellent local politician and a hugely supportive counsellor, but as door after door is slammed I must broaden our fight and so I need to give a few details.
We have, or have had, anorexia, bulimia, depression, self-harm, an overnight disappearance, an "accidental" overdose and an unsuccessful suicide attempt but yet the NHS offers only anti-depressants and a self-help book - not received yet. In fact the anti-depressants were withdrawn after the suicide attempt and we had to fight to get them reinstated.
Health professionals will not explain why there is no immediate crisis help although we have been demanding this for months.
The only feasible explanations are that they do not believe the symptoms are real but are simply escalating attempts to get attention; that their diagnosis is that there is no long-term cure and informing the patient of this would be harmful; or that treatment would be be so hugely onerous on a therapist that they must deny treatment.
If there is to be no treatment then at least tell us the truth. Despite our best attempts the truth remains hidden. The professionals will not address the issues. We are fighting without knowing the actual diagnoses.
A seriously ill patient has been cast out by the NHS as unworthy of treatment!
We can't even get a genuinely independent private opinion without a referral from our GP. The very professionals who have shunned the patient have the power to deny (or, at least, colour) a second opinion.
I have been pushed to write today because a well-respected mental health voluntary organisation has refused help because the support required is quite intensive and beyond their capabilities.
Too difficult for the voluntary sector and unwanted by the NHS!
How can this be?
How can a seriously ill patient miss out on treatment? Something is amiss.
We need the truth now.
We need treatment now and have needed this for months.
I say again: if there is to be no NHS treatment they, at least, owe us the truth.
But as I write this with anger, fear and tears I see no way through. The NHS, for reasons unkown, has left us alone with neither diagnoses nor explanations. I am struggling and I am the healthy one! What it must be like to be suffering I can't imagine but I can only admire the strength to get through each minute.
I never believed that the NHS - my national health service - could act with such callous disregard for one's health; for one's life.
I feel anger and dread I have never felt before and I trust and pray that, from somewhere, help appears. The future is unclear but somewhere, somehow I must find a way through.
I will not let the NHS win.
Imagine talking about winning. I'm talking about the future of our family, about one's life. The NHS should be falling over themselves to help but instead they're running away from us scorching the earth as they go.
This is life or death.
For God's sake, NHS. Choose life and help!!
19 comments:
As this is painful to read I can only imagine how painful it was for you to write.
But we can offer no help, just a sympathetic ear.
Don't give up. Somewhere, hopefully, you will find a medical professional who still gives a damn and will help you. Keep searching. They too are totally frustrated by the system and rant and rave on their own blogs.
Totally meaningless I know, but best wishes to you and your family. May it all be resolved successfully.
...We can't even get a genuinely independent private opinion without a referral from our GP. The very professionals who have shunned the patient have the power to deny (or, at least, colour) a second opinion...
That's the problem with a monolithic organization with fractured chains of command and people in there disillusioned and working for themselves. Something's too hard? Shun it.
It's outrageous but as JMB says - what can be done?
Calum - I've sent this to Ian for the Roundup.
My GP friend has been talking to me for years about "defensive medicine". As with teaching and social services, the first priority in medicine these days is not to get sued. Everything become procedural, everyone gets buried in paperwork. The front line complain that it's not what they joined to do, but the managers stand back, guard themselves and hope-and-plan for a smooth path to retirement.
But there's so many procedures and forms that there will be a trail of errors and omissions, which makes the cowardy-custard system vulnerable to blackmail. So the determined "squeaky wheel" will get greased.
Find out about the procedures, entitlements, deadlines, regulators, complaint systems etc - the literate are more likely to get what they want.
Hi Calum,
Try working back the other way. Start at the top by identifying a specialist who deals with the problems you have. Ask how you get referred to him/her, then take that step and all the steps back until you find the person who can start you back up the ladder again to get the help you need. If that person is your GP (and it usually is) say you've spoken to the specialist and he/she would be happy to see you, but you need a referral letter. Make sure you let your GP know that you are laying the responsibility on him/her now, for whatever happens from now on. Insist, but nicely. They won't want to do it because referrals cost money, they're not being difficult, there's just not enough to go round. Sometimes, whatever the question is, the answer seems to be "no".
Don't take any bullshit. Just be calm and refuse to let the buggers rile you, use your charm, find out which authority would kick them in the balls if you made a complaint about them and let them know you have that information, but in a non-confrontational way. Use all the negotiating skills you can, let them know you mean business and you will not give up. Use your charm and butter up anyone who needs it. But don't be mean to the little people on the way up (secretaries, PA's receptionists etc.,) if they don't like you, your forms, messages etc., will get buried for ever, but if you get lucky they will understand your problem and go that extra mile for you.
The NHS gets a tremendous amount of criticisim, some deserved,some not. I can tell you from personal experience that all services are spread very, very thin and it's almost impossible to get any form of customer satisfaction without a fight. Working for the NHS is like rearranging the deckchairs on the Titanic, futile but there are whole armies of people who think that this is the important thing and they get paid too much money for doing it. The rest of us just try to do the best we can with the pittance that's left. It is unbelievably frustrating, no wonder NHS morale is so low.
You need to get to someone who gives a damn to be on your side, someone who will empathise with your plight and be bothered to get stuck in and sort it for you. Good luck with the search. Sorry about this lengthy comment, and sorry too if you've already done all of this already. This isn't the way it's meant to be, I know.
By the way, your blog isn't shit, it's just serious. Don't give up, you probably need a rant every now and then.
Best wishes, and hope you get the help you need.
Swearing Mother
Thank you so much.
We had thought about working backwards but only to the degree of knowing where we wanted to go and then asking the GP. Your extra bit about contacting the specialist and getting to the point of knowing that there will be a place if only the GP refers we hadn't thought of. This is great advice. We will follow it.
Good practical advice and not a swear word present!!!
I will blog about progress.
Again many many thanks.
Hi Sackerson
Thanks
I have already told the medics that if, through their inaction, the worst comes then I will "sue their arses off".
I know this doesn't indicate any great literacy on my part but we are intelligent and literate and we are being shafted. Undoubtedly, there is something we are not being told which is behind the NHS inaction. I know htis may seem paranoid but all medics have nbeen given ample opportunities to be opena nd honest with us. They haven't been.
Good Luck Callum. As someone who has had to fight to access health care in a number of countries, it can be a major challenge.
Good luck to you Calum, I hope you get what you need and they get what they should.
If there is a clinic or some facility then phone them every day and ask to fill a cancelled appointment...
So very sorry to hear about all this Calum, and on my first visit to your blog. I don't think I can offer any practical advice, by rest assured that you shall be in my thoughts, and the thoughts of many others during your fight. Goodluck!
Calum, I wish you all the best with this and hope that my experience may be useful to you.
About 15 years ago I started having seriously bad headaches after a bad fall onto my head. Two months later the doctor was still dismissing these as migraines and refused any referal. When my left arm became paralysed my mother rushed me to A&E where I was admitted but given very poor treatment, (we later found out that my GP had been in touch with the hospital to suggest that I was, at worst, merely hysterical).
Two things eventually convinced the doctors otherwise. My lack of care over a previous injury and my mothers dogged determination. If you keep pressing and making their lives so miserable that it is easier for them to do what is needed than put up with you. You will get there.
I needed two extra holes in the head, (literally), but I hope what is required your end is less problematic. With a system like this the best thing I can advise is to be such a pain in the arse they have to deal with you.
All the best.
Good luck Callum. I have to say having suffered from depression myself I don't know what I would have done without help from councillers and doctors when I needed them. I think your family is very brave to be confronting this without any medical help and I'm really impressed- hang in there though, the main issue is to confront it and realise its there. I don't have any advice just good luck, and I'm willing you to succeed and keep blogging about it if that helps.
Everybody:
Thanks so much for your support. Some I have thanked in earlier comments but now thanks to Will B, Falco and Gracchifor your recent comments of support.
I will blog again if I have the stength and the need to do so or if there is a material change.
Swearing Mother: We are following your advice and are finding some centres which could help and the names of consultants who have referred to them. Hopefully this will help although we're at the very earliest stages.
I'm so sorry. I concurr with jmb, don't give up. You and your family will be in my thoughts.
Calum, I am so sorry to hear about all you have been going through. Wishing you all the best. As others have said, please don't give up. Take care, and God bless, Bel.
Lady M and Bel
Thank you both for your kind comments.
As I said on Thursday's post "You cannot imagine, and I cannot describe, how much this helps me."
I feel slightly better because we're not sitting at home moaning but are actively seeking centres where appropriate treatment is available and then we can make a case for referral. I don't doubt that we have much to do to achieve our aims but the mere fact of doing something proactively is hugely beneficial.
ironically, your story sounds like that of millions of americans who have no access to health care at all, and for so many of us the outcomes are equally frustrating.
it also sounds like the stories of so many of us who do have insurance, and are battling their insurers to get denied treatments.
i can only hope things work out well...and that she's able to find a bit of peace.
MENTAL depression or shock is a very dreadful disease as unless and until a person is mentally fit he cannot be physically strong.
aprillexicom
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Dual Diagnosis http://www.dual-diagnosis.net
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