This is a guest post by Calum Carr describing his wife’s desperate mental health problems and their frustration at being unable to get a diagnosis from the NHS, and for better funding for those in Scotland suffering from eating disorders:
I am campaigning - the first campaign post is here - to get NHS Lothian to provide assessments, diagnosis and treatment for Mrs Carr, to tell us what they believe is wrong with Mrs Carr and explain why she has had so little support and treatment. For more than 1 year I have tried to get answers. Our MSP has tried also unsuccessfully to get an explanation. 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 - anorexia, bulimia, self-harming, suicidal thoughts and attempts, has “disappeared” twice (police involved), dissociation and probably an identity disorder. She is unable to be a mother to our children and 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 now have moderate depression and am very stressed, and the children 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. Mrs Carr has been treated as though she is a nuisance patient and each hospital 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.
Mrs C is getting no NHS treatment despite seeing consultants and has had nothing but anti-depressants since June 2007 other than 10 1 hour weekly sessions for bulimia - Jan to March 08. They didn’t have any effect.
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.
“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.”
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, and help our children get their mum back to how she used to be before this nightmare started. Please support our campaign. Ensure throughout the UK, that the doors are open to help those who also suffer from mental health problems and eating disorders. More funding and early support desperately needs to be provided in Scotland to help those with eating disorders, the wait to see a consultant here can be a year unless it is critical. By then, it can be too late.
Thank you for reading this. If you can help, please contact me at calumcarrstakeatgooglemaildotcom
Ellee
Thanks so much for offering me this spot on your blog.
I’m sorry my long-windedness required you to edit the post. You did tell me how long to make it but ….. “Never say in one word what can be said in one sentence” is my unconscious motto!!!
Let’s hope that through this effort we can produce sufficient pressure for a change of heart.
Again, many many thanks.
Calum
This is indeed a very sad state of affairs for this family and I do hope that help can be found for Mrs Carr, sooner rather than later.
Good luck for the campaign xx
I can only pray that you all get the help you so desperately need. Mental illness has a ripple effect - on everyone connected to the sick person and those caring for him/her. I know because of having been through it with my late husband and currently my younger daughter. I did get her proper help here in Canada, but the government (system) really just lumps all disabled people together with drug addicts and lazy welfare bums. She isn’t allowed to earn more than a certain amount of money or else they just take it off her disability cheque. She would get an income tax refund this year, but they will take it away from her. It is so frustrating for her to not be able to get ahead in life. She & I are now planning on how she can start her own (cash basis only) business combining her degree in makeup technology and her talent for crafts. And then the $ will have to go in an account under a different name (probably mine) so she won’t have to declare it. It’s totally insane!
Mr. Carr - keep pressing on. Fight for your wife’s right to be treated properly and fight for your right to be informed on all aspects of her treatment. Also fight for your children’s right to live life without fear and anxiety. It is a terrible battle for you all, but know that you are not alone in this. Keep up the publicity any way you can and you will be surprised at how many people will come out of the woodwork to support you.
I agree - mental health service users are the people who most need an effective and approachable NHS. Good luck on having NHS Lothian to provide assessments, diagnosis and treatment for Mrs Carr!
It was good to stumble across Calum’s post here. He writes eloquently, honestly and openly about problems that beset many needful, would-be NHS patients.
Calum’s straightforwardness is in direct contrast to the convolutions and distortions that patients often receive from PCTs and other arms of the NHS’s dire bureaucracy.
Unfortunately this seems to be the largest source of frustration for our users, and that is the getting of a diagnosis. Quite often you will hear of one authority giving a diagnosis, only for the user to move to another authority and get a different diagnosis. There needs to be consistency across the board.
Reading Resource