Email #5

Dear Harriet

Yesterday evening, when my post arrived (yes, I agree post shouldnt come in the evening, no I dont think its an excuse for Mr Osbourne to sell the rest of the Royal Mail) I was greeted by a large white envelope (makes a change from so many brown ones-they are never good news) and I knew what it was the moment I read the line "To the Parent or Guardian".  I tore open the envelop with mixed feelings, but the overwhelming relief at finally being heard was the strongest.  You see, this envelop contained forms for me and my sons school to fill out and two appointments for us to attend.  You have no idea how good this is.  Because this is a letter from CAMHS.

I mentioned before how I began to realise his problems were significant around the age of 6.  And from that moment on I have been fighting for support for him.  Part of this fight is fighting for a diagnosis.  A comprehensive diagnosis that takes into account all of his needs.  Its a time consuming process with report writing and referals and professionals and waiting lists.  The recent program "Born Naughty" has, im told, been good for highlighting awareness (I confess I didnt watch it, as I was unsure how the program makers stance would be, and Ive been put off by the current culture of Poverty Porn Programming) and in the main, the National Autistic Society have said I was well made.  However they have highlighted the fact that it is misleading in terms of how quickly a diagnosis is made and how early intervention is so important.  In the vast majority of cases, people are not seen quickly because waiting lists are HUGE and CAMHS is sadly grossly under funded.  Early intervention IS massively important, BUT so FEW get it.

It took 6 years for his first assessment with CAHMS.  The area he was referred to (our catchment area) saw him for 15 minutes on his own and questioned me and my mother about his and my development history for a further 45 minutes.  After 10 minutes they came back with an inconclusive report.  They told my son categorically he was not "neurodiverse" then explained to me he didnt fulfill the criteria in one perceived area because he "had friends" and was therefore "social".  This completely goes against what anyone WITH Aspergers will tell you- its not the making friends its the relating to friends and keeping the long term relationships going or understanding when they have plans with other people.  They then wrote to me to say he did have it but couldnt meet the criteria and then wrote to the GP so say he did have it along with anxiety.  Since then I have been battling to get a second opinion and a more conclusive and comprehensive diagnosis.  I was stonewalled for the first year.  It was only after I telephoned a CAMHS in another area for advice I got any support.  By this point my son's symptoms had got worse.  He blamed me, for taking him for assessments, told me there was nothing wrong with me, while getting increasingly violent towards me, he started to self harm by hitting himself, he developed an eating disorder (some days he hardly eats) and he sank into depression because other people didnt understand him and he didnt understand him.  When our dog died he broke down in tears and told me he wanted to kill himself.  I was frightened I would find he had.  It was a terrifying time.

As I said previously his school were wonderful.  And they had to be, because no one else was being supportive.  My GP wrote to CAMHS and the community psychologist, who has never met my son, wrote back and blamed my poor parenting skills and suggested if I couldnt cope I contact his school.  My GP was livid.  It showed he hadnt read a single line of what she wrote.  She wrote again, and they still refused to support him.  It was a harrowing time.  Finally in March, after the seizure I suffered in Decemeber was ruled to have been brought on by lack of sleep and stress, the GP dealing with my neurological referals asked me to explain about what was going on.  I explained how his colleague was being stonewalled and that CAHMS in the next area had said they could consider a referal IF a GP wrote a concise report detailing my concerns.  He read back my sons file and couldnt believe the contradictions in it, especially since my son had now been awarded DLA based on the community psychologists report.  Theres a classic phrase used colloquially that I believe is appropriate here: the left hand doenst seem to know what the right is doing.

And how can it? With CAHMS so massively underfunded.  And not just specifically CAMHS but mental health in general.  This isnt just troubling for the patients who go un supported, or the carers like me who are left picking up the pieces while falling apart ourselves, but it has a knock on effect to the NHS full stop:

"The minutes from the mental health crisis care concordat steering group, attended by health minister Norman Lamb, suggest that the failure to treat mental health patients properly is contributing to pressure at A&E wards in NHS hospitals in England, which have missed the target of 95% of people to be seen within four hours for 93 weeks in a row They state: “The RCEM [Royal College of Emergency Medicine] raised a concern that high numbers of people ending up in A&E indicates a system failure. People return to A&E because community plans are not working for them." (http://www.theguardian.com/society/2015/may/06/system-failure-nhs-mental-health-services-pressure-ae-wards-crisis-care-concordat)

And as I said, this was the experience I had when my son was recently in A & E.  He was "lost" in the system as overworked front line NHS staff dealt with mental health patients who are going unsupported by the overworked and underfunded crisis teams.

"Senior mental health professionals working in Child and Adolescent Mental Health Services (CAMHS) are reporting major concerns about reductions in service for children with mental health problems in England.
These concerns and others listed were revealed in a 2014 survey of clinical psychologists* who are members of the BPS Division of Clinical Psychology's Faculty of Children, Young People and their Families and work across 43 separate specialist CAMHS.

71 per cent reported their service had tightened the acceptance criteria and raised the severity thresholds for being seen.
54 per cent of respondents were concerned about the deterioration in provision for young people and families in crisis or in need of intensive treatment.
46 per cent reported no out of hours service at all in their area.
66 per cent of services had seen a reduction in quality of provision.
56 per cent said availability of psychological therapies had decreased in last 3 years.
53 per cent had seen a move to more diagnosis led, medicalised approaches."
(http://www.bps.org.uk/news/major-concerns-about-reductions-child-and-adolescent-mental-health-services-england)

My experiences are being played out up and down the country, all the while people are struggling.  Our children are not demons and they dont need curing, they are not "Born Naughty" in the sense that they are not naughty because they have any control of it.  There are positive upsides, when things are going well, and my son is supported, he is a wonderful person, he is very loving and cares about me and his brother.  He doesnt want to be seen as a horrible person, he wants to be supported and understood.  But support is very hard to come by without a proper diagnosis or a comprehensive one, and support is no existent if the community psychologist just thinks your a bad mum.

I feel like a bad mum sometimes, but my sons schools tell me Im not.  Someone who fights as hard as I do for their children and to make sure ALL children get support, is not a bad mum I am told.  But when you cant control the behaviour problems and that is what you read in the letter reply to the GP, that is how you feel.

This needs challenging.  This is not an excuse for privatization and the continued "fire sale" of our public bodies.  MPs NEED to stand up for our NHS and our under funded services and our over worked professionals.  MORE funding is what is needed.  The NHS is part of the welfare state that is Labour's legacy.  So stand by it, Stand by us, the Labour party members and supporters who are standing up for our NHS.

Please, stick to your word and listen to us.  Return the party to socialist principles, fight the cuts to the welfare state and protect our NHS and call for funding to be increased to mental health services.

Constituent, Labour Party member, Union member, sleep deprived carer, concerned citizen, self employed mother, mother of a teenager with ASD.