Only a few of you will have seen this badge and will know about our campaign. Hopefully soon many more of you will support us. Let me give you some background with links to my blog. Full details are available at Calum Carr's Take.
I am campaigning - the first official campaign post is here - to get NHS Lothian to provide appropriate assessments, diagnoses and treatments for Mrs Carr but firstly I need this health board to talk to us, to tell us what they believe is wrong with Mrs Carr and to explain why there is, and has been, so little support and treatment. For more than 1 year I have tried to get answers, our MSP - health is a devolved issue - has tried also unsuccessfully to get support, assessment, treatment and explanations. In fact the health board took more than 6 months to reply to the MSP's second letter: a reply which did not address the key issues raised in the MSP's first letter. We have hit a brick wall, our whole family is suffering and now I believe that only by putting massive public pressure on the health board can Mrs Carr get the help she needs. I hope you can help us.
Until 2 years ago Mrs Carr was a fully functioning mother and Open University student with brilliant grades. Since then, and still today, she has severe mental health problems - anorexic, bulimic, self-harming, suicidal thoughts, attempted suicides, has "disappeared" twice (police involved), dissociation and probably an identity disorder. Her normal life is nowhere to be seen: she is unable to be a mother to our children; unable to study. She is a shell of the woman of early 2006. I have taken on all parenting and home responsibilities in addition to being a carer to Mrs Carr. The whole family is affected: I have moderate depression and am very stressed; the children have been deprived of their mother for more than a year and are showing signs of increased stress and anxiety. Earlier posts about Mrs Carr's condition and the problems with NHS Lothian are here and here and here.
NHS Lothian has offered very little support. In fact I have over-estimated their support. Mrs Carr has been treated as though she is the patient each department can't wait to get rid off. Were it not for a brilliant private counsellor I have no doubt Mrs Carr would no longer be with us.
Last year I wrote: "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 this is what they believe than, for God's sake, tell us, explain your rationale.
A previous post said, "I should make clear that I am not taking the line that Mrs Carr has Disorder Z and that I won't rest until she is diagnosed with it. Her history and symptoms fit with Disorder Z; national experts believe she should be assessed for this disorder but NHS Lothian remains silent on their diagnosis and reasons. Until NHS Lothian is open and honest with us I will not rest. This is all I ever wanted; openness, honesty, trust in clinicians so that Mrs Carr has an opportunity to improve. What we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.
The minimum NHS Lothian should do is tell us the truth. Then we can either accept their version or fight it but by refusing to engage with us (or our MSP) they leave us struggling in a vacuum. How can we accept a diagnosis if no-one tells us what is the diagnosis? How do we challenge a diagnosis if no-one tells us what is the diagnosis. How do we fight for assessment if no-one tells us why they won't make a referral?
Even worse by not engaging with us Mrs Carr has been left ill and, apparently, unwanted, for an additional year with no likelihood of effective assessment or treatment and the rest of the family has been left with the stress of caring for Mrs Carr and of seeing her continue to suffer unnecessarily.
Also the trust which Mrs Carr should have in the NHS has been destroyed. How can she be expected to trust clinicians in the future when she has been treated so badly?"
Trust? On two recent appointments with a consultant psychotherapist, not for treatment but for a second opinion, Mrs Carr was psychologically abused in a most cold, callous and dangerous way. Rather than describe them briefly here it is better if you read the two full posts (1 and 2).
Our local evening newspaper, The Edinburgh Evening News, is preparing an article highlighting Mrs Carr's plight. God, I hope the NHS can't taint the reporter and his editor. I know that, even if this article is highly supportive of us and highly critical of NHS Lothian, nothing will change. They haven't held fast for more than a year to cave in suddenly now. That is why I am asking for your support now. Only with massive MSM support and, hopefully, political support will Mrs Carr get what she so desperately needs. Through this web campaign I hope to build MSM support.
Although health is a devolved issue the problems we have encountered will be found throughout the UK. Therefore, regardless of where in the UK you live this - or worse - will be happening now. By raising the profile of Mrs Carr's case we will raise the profile too for others who are left to suffer or die without NHS help. Even if you live outside the UK you can help by ensuring that this story becomes massive.
Let me say again, all I ever wanted was openness, honesty, truth and trust in clinicians so that Mrs Carr has an opportunity to improve but what we have encountered is coldness, closedness, callousness, obfuscation, delay and a refusal to engage in any serious discussion of Mrs Carr's problems.
The system has closed ranks against us.
The system is killing Mrs Carr.
In May I quoted Nick Clegg who spoke of mental health services with the NHS. I quote Nick not for any party political reasons but simply because his words resonate with me:
""Mental health service users are perhaps the people who most need an approachable, effective and enabling NHS. We will know that we have succeeded when it opens doors to a brighter future for them."
Don't let NHS Lothian keep the door closed on Mrs Carr - help her, support our campaign.
Ensure, throughout the UK, that the doors open - help those who suffer in similar ways, support our campaign.
Please do whatever you can to raise the profile of our campaign.
Finally, huge thanks are due to Ellee for giving me this platform.