Why does there need to be a week? Does it do the job? In our house, we respect MH 52 weeks of the year.
I am struggling to remain optimistic about the mental health services available in this country for our young people and keeping my self together. Whilst I have stayed in one piece during Covid and just had my second vaccination. For this NHS, I am very grateful. Ive not listed loads of stats below because they make me sad, just our current timeline of one young man and camhs.
The mental health services for young people (CAMHS) in my area are a disaster, frustrating, soul-destroying and not fit for purpose. I don't think it's just my area, but the comments below are from my personal experiences over a period of six years. I regularly read about very similar situations around the UK on social media posts. I've seen job ads advertising for people to work in CAMHS through agencies, and one of the qualities a potential member of staff has to have is dealing with 'difficult parents'. I find this disrespectful, and I ask you CAMHS to look yourself in the mirror and ask why you think this label is appropriate and why we as parents display those apparent behaviours?
I have experienced CAMHS over many years now, and during my child's diagnoses journey (this took about two years), it was ok; I didn't know what to expect, and I wasn't as well-read as I am now through necessity. It was about six years ago, so the memory fades however it didn't feel as stressful or traumatic as it continues to be.
My child's school recently called me and said they would like to refer my child to CAMHS due to their anxiety levels growing; this was the Safeguarding Lead; she works with many young people. Was I ok with this? They are a specialist school; they see lots of young people, have on-site therapy, and If they felt the time was right to reach out for further support, I respected that decision completely. The referral was sent by email on 15 3 2021, marked urgent. Below is the current timeline:
15 3 2021 Referral sent as urgent
19 3 2021 I received a phone call from CAMHS following up on the request for my child to be seen. I FELT the CAMHS professional was relatively short, challenging and maybe showing her frustrations through the phone at underfunding; I was surprised as it was 6 pm. The referral from school was about self-harm, suicide and not wanting to be here any longer. Hearing your child say these things are heartbreaking; you want to take the pain away. I came off the phone in tears as I felt she didn't believe me; the school had referred him this time, not me or the GP. I extend an invitation to this person to join us at 1 am 2 am on a Tuesday or Wednesday when my child's brain is so active and stressed he couldn't sleep, and we all have work the next day.
Zoom assessment 7 5 2021 not sure they could help as they are not Autism trained? But you diagnose? Are you discriminating against children with Autism? Loud birds in the background, there was an offer to move rooms, but my child is sensitive to noise, and he left the room said it was like fingernails down a blackboard. We wait for these appointments like you can't imagine; they always start with setting the scene and the diagnosis, that's 10 minutes gone of our one hour. This is for the 100th time, are there no notes, computer log of info? I suggested the person speak to the referrer from school (I was maybe not using the correct language as it wasn't seen as serious, I want some strategies, prevention not cure) 11 5 2021 PM before a team meeting on the 12 5 2021. It didn't happen; no reason given.
14 5 2021 Told we would be referred and get a case manager
17 5 2021 Told we wouldn't be getting a case manager we would have to wait in line with others, no explanation given
21 5 2021 Received a call from the Duty MH worker after school called to ask why the decision had changed with the case manager and got 50 minutes of conversation about Autism; I did learn some points; however, as my husband said, they could have spent that time with our young person. This person also spoke to the school. Good comms, but the system is completely broken.
Constant calls throughout with form teacher, safeguarding lead at school about various incidents, sessions with OT on-site at school keeping each other up to date, two days just too anxious and tired to go to school, this has never happened previously in all school years.
1 6 2021 scheduled paediatric six-monthly check-up, told them about CAMHS referral, trouble getting Melatonin, DR said he would write to CAMHS, so now we have school and paediatrics writing and ourselves chasing up appointments. All this time for one child, and there are thousands also waiting. Someone needs to get a grip of these processes and workflows and make resources available; they don't make sense, and I'm no medical expert.
7 6 2021, we are waiting for the case manager as apparently, we are getting one, but they can only help with primary treatment and a few sessions; we need to get more support from the school through speech and language therapy.
On a side note, some of the anxiety starts in the evening when it's sleep time, he only has one prescription to help him sleep, and that is Melatonin. Now, this is nothing to do with CAMHS, but it proves that everyone works in their vertical silo and that links in the chain are broken. I have never taken drugs, but I am sure watching the documentaries on TV that it would be easier & quicker to get Class A drugs than Melatonin which you can buy for adults in Holland & Barrett and over the counter in the US. The last prescription took five phone calls, one email, two follow-ups to the pharmacy and then the medication is miles away, and I have to collect it? What if I didn't drive? Nothing is easy, and life can be pretty challenging without all this.
I've read lots during mental health week about it being good to talk, seek help, let someone know how you are feeling, but as a young person with parents and a school that wants to support you, what is the line of help that is available? I am sick to death of being told by CAMHS; we are busy, not enough staff, not enough trained staff, the waiting lists are about 40 weeks +. On more than one occasion, we have been instructed that if the anxiety or threats to life get more severe whilst waiting for an appointment, go straight to the crisis team at Adults A & E. How many children are existing or dying because of this process? I was in A & E a few weeks ago, and two young people came in whilst I was waiting to be seen; they had to sit at least the four hours I was there in a busy waiting room with everyone else; this is not the right environment.
Anyway, to cut a long story short, in our last referral before this one, August 2020, eight Autism specialists were being recruited for the CAMHS team in our area. This recruitment has not happened. We were told that there was no one with Autism specialisms this time; these two appointments are about 18 months apart. There is a fantastic program online about transforming the services of CAMHS in our area, the brochure is impressive, and clearly, a lot of hard work has gone into it. But, my problem is that there is no service underneath it. My son is not getting the help that he needs; we as a family are being left to support him in the best way we can. If my son had a physical disability and couldn't walk, would he be given equipment faster because it's visible? My son has an invisible disability, and I feel that he is being left unsupported as there is no service and you cant see it.
1 in 100 people are Autistic in the UK; CAMHS are the NHS department that diagnoses Autism; you have to go through many meetings, tests, different parts of the NHS before a diagnosis is confirmed. We didn't want the label, who does, who wants to be seen as different because, frankly, people can be very unkind. I thought with the diagnosis; we would get the help we needed. We did in some areas, but what I can't work out is why don't the department that diagnoses Autism have future provisions for follow up support.
Anxiety is the most significant reported issue with Autism. If 20 people are diagnosed, the probability of some of that 20 needing support with their anxiety will occur. The biggest problem, anxiety (as a co-morbidity), should there not be some Mental Health professionals specially trained in this area?
Everything is so exhausting; I am tired, and I don't know what to do next, is there anyone out there? This is just health, we have had the same frustrations with Education.
I've written to my MP, spoken to other parents, talked to friends and family in the NHS, private companies, commissioners, CCGs, and everyone looks and nods and says I agree with what you are saying. I don't want those in decision making positions to nod. I want my child to get the help they deserve. If they had a broken arm, would you say, oh, we've no one in today doing casts, you will have to wait?
The Care Act, The Equality Act, were all put in place to protect people's rights. They are failing my child and other children; what do I need to do to get my son seen by someone who can deal with and advise us on a plan to move forward. Do I need to threaten legal action? I don't want to, but what am I left with? I am self-employed. I don't claim benefits. When I have to spend extra long periods writing, fighting, attending appointments, sitting on the phone chasing and getting exhausted and frustrated, this all reduces my chances to earn for my family. It's absolute inequality.
The system is broken, not fit for purpose, and departments don't speak to each other in a person-centred approach; there is insufficient funding. I'm not looking for a cure; I'm looking for a quality of life for my young person at present; as it is reduced without professional help.