CAMHS users,ex users would like to be users but cannot access services -UPDATED, SUMMARY OF VIEWS

Karen A · October 25, 2008

Hi All.

I am wondering if any of you great crew would be willing to help me with some information.

Ben and myself are members of a usergroup in our area which links users views and opinons with professionals.

Next month I have been invited to participate in an annual away day for all CAMHS professionals and offer a user perspective.

It is very difficult to obtain the views of local CAMHS users whilst maintaining confidentiality.

So I have the idea of asking you crew a few questions.

''What are the big issues that concern you ?''

''What would you like CAMHS to be doing that they are not doing ? ''

''How would you like to be treated by CAMHS professionals ?''

''What are the current gaps in provision that you can identify ?''

I do not intend to use any personal storries unless anyone feels that is what they would like to do....in which case feel free to pm me.

I plan to see whether I can get enough views to come up with a list.I would like to use the list to say to CAMHS ''This is what the issues are amongst CAMHS users involved in a Forum that I participate in how do you think you are doing on the issues.?????......and see if I get out alive '' :lol: :lol: :lol:

Mods if anyone spots this I am happy to CREDIT the Forum in my presentation or not as you all see fit.If I am breaking any rules feel free to Edit or let me know.Thanks Karen.

Edited October 29, 2008 by Flora

bikemad · October 26, 2008

My dealings with cahms are that they are abysmal and too slow n treat the parent like an idiot. I had been back n forth with my son and about to get the diagnosis id had verbally in writing and also meds for my son and that cahms guy left n ive got another n he wants to go all the way back to square one and start all over again after ive already gone thru it for over a year and in that year been close to breaking point...now this guy is saying o maybe you didnt bond with him, might it be your parenting skills etc etc n wont even acknowledge the other persons notes...im very close to asking for a referral to someone else cos his whole attitude and demeanor stinks. Cahms people ought to show the parent and child more respect, accept the parent knows the child better than anyone else and also that 20minutes in a fake setting aint enough to diagnose a child.

Sorry bit of a rant but at the mo ive nothing but contempt for cahms.

hazma · October 26, 2008

CAHMS-Completely Abysmal Horrendous Meaningless Service. :wallbash: :angry:

peaches · October 26, 2008

My first and biggest complaint about CAMHS would be the waiting. Lets face it, when you get referred youre usually at your wits end anyway.

We were referred, told 4 month waiting list, then after 4 months I phoned weekly for an appointment and each time I was fobbed off with the same answer "Its going to a meeting next monday and it will be allocated to a clinician ...." Thing is, I was told this every week for 6 weeks and in the end I naturally became rather irate. Then I was told my appointment would be in December or February, that is 8 to 10 months not 4! I know that some of you will have waited longer, but it is still unacceptable dont you think?

I was so cross I wrote a really assertive, strong letter about the whole process. I got a phone call a few days later and also a week later a letter from the head clinician in the team. It did explain the process but didnt bring our assessment appointments forward any. But I think because I was such a pain to them (constantly ringing up and asking for what I thought was my childs right), they gave me a general appointment with a Clinical Psychologist. I this one cant make the diagnosis but is just taking the history and giving advice. In other words she is marking time until our appointment comes up with the ADHD and ASD team. Yes, she is really nice. But not really any use except for me to let off steam to!

JsMum · October 26, 2008

''What are the big issues that concern you ?''
''What would you like CAMHS to be doing that they are not doing ? ''

''How would you like to be treated by CAMHS professionals ?''

''What are the current gaps in provision that you can identify ?''

Biggest issues that concern me is that the whole system are trying to save money, by not giving provisions in childhood makes it more likely children will require services in the future costing more in the long run or worse still more serious consequences because even adults dont get the services either.

How would I like to be treated, well with dignity, confidentiality, honesty,

What are the gaps, mmm well wait because weve had to climb out the gutter many times, alone.

Well give me a magic wand,

A night service, with trained community nurses to give instant aid and support for children who are quite literately raging or suicidal that actually visit in person, not at the end of a ###### phone, not that is even available either, the phone service is the emergency duty team, and what do they know about mental health in children.

Mental Health care workers actually supporting the children in the home, for 6 months we had family support care workers who came and supported J with his bedtime routines, it didnt work because they didnt even know what ADHD or ASD was, it was hopelss, and instead they increased Js Anxiety and it didnt work out, we dont have anything now, it was that or nothing.

What we do really need though is a care worker with experience with ASD/ADHD/Mental Health in children, then we might of had a chance.

More behavioural therapy, Art Therapy, Play therapy, J has only just been added to a list, but now he is going to recieve this in his educational placement.

More family support, councilling, family programmes, not parenting programmes like Tripple P, something spersific to children with special needs and something that can be implimented that doesnt mean distruction and war at home/school.

A whole shuffle in waiting lists, and a much shorter waiting times for crisis interventions, at the moment its 72hrs if a child is a danger to themselves, otherwise its a police station cell or a secure unit, both dont have the right provisions with children with ASD/ADHDs.

A whole service in schools/colleges educational information on what ADHD/AS/AUTISM/OCD/TORETTES/ANXIETY/BIPOLAR DISORDER/SELF HARM/DEPRESSION is and support in each school by a recognised mental health provision and staff.

Support, assistance, guidance, and practicle support.

Oh yes and no more interagency working together to save money, to actually work together and help the child, even if it means a bit of money has to come from each service pot of money.

Instead they all flee like mad and suggest that the problems are not in their service and run like mad before funding is required for a provision from their service, be that Social Services, the Health Service, Education services, what they should be doing is working together for the child.

by gum if only they could do it right, the system would save a load of money, intervention is cheaper, prevention is cheaper, crisis is costly but it is distructive too to families, the excuses are always, oh weve got NO funding, sorry, or we dont have that service here, or your child wont meet the criteria, and when they do its all changed again, and again your left to cope with a child that requires support, yesterday.

JsMUM

Edited October 26, 2008 by JsMum

julieann · October 26, 2008

Hi Karen A,

CAHMS - too slow. I waited 12 weeks for an appointment to be phoned 10 minutes before and told staff off ill. New

appointmnet in a further 12 weeks.

By which time son had broken both wrists and was out of school. After 24 weeks saw proffessional who told us your sons

needs are complex. He will get a diagnosis of asperger's syndrome but I'm not qualified to give this

Had to wait another 12 weeks for appointment at ASD diagnostic establishment by which time son had been deregistered

from school after suicide attempt for last 2 weeks. In the summing up we were told that a lot of our sons behaviour was

because he had been home educated. When for two weeks out of 7 yrs

Had to have report re written. Despite us spending 7hrs with them on two occasions . Most of sons history was incorrect

and at one point they changed his name completely. We also got an apology from them by phone for causing more

stress to my son by talking to him as if he was a baby. 13yrs at the time.

Karen A · October 26, 2008

Thankyou all for taking the time to reply and for your honest opinions.I will ensure that I take time to read through them all...however cross they may be. :notworthy:

Karen.

Kazzen161 · October 26, 2008

I haven't had dealings with them for 8 years, but it doesn't sound as though anything has changed.

We only ever had one psychologist who knew more about AS than me and was an actual help. Others just used us to learn all about AS and then left - and then you start all over again.

Staff need to know enough about ASD to help and accept that it is a long term condition, so help needs to be ongoing and available at short notice.

Cariad · October 26, 2008

We go every few months for T's meds. They weigh and see how tall he is and do his BP and thats about it.. It's a new doctor so she does take an interest but they are like glorified pharmacists/doctors IMO. The funny part is the other doctor I had would prescribe anything to usher us out for the next appointment, I was even tempted to ask for some valium for myself :lol: (that was a joke)

jb1964 · October 26, 2008

Hi Karen,

Obviously lots of what is written is personal experience which is going to differ from place to place. First time my daughter was referred we probably had an appt within 6 weeks - although it would have been quicker if there hadn't been problems with the referral going to the wrong area to start with.

Our daughter has recently been referred again in September and our appt. is 11th Nov - so that's probably about 8 weeks.

I feel this is too long and I'm sure everyone feels their appt is urgent but understand that for them to assess and help an individual it isn't a one off 1hr appointment - the first time round our daughter had an intense six months assessment programme involving one-to-one with many individuals - they only have limited resources and they don't just deal with ASD etc.

I have often thought that perhaps they could have something similar to a triage nurse where you get an initial consultation or questionnaire to fill in which might help them root out the more urgent cases - although even then what would be classed as the urgent - suicidal thoughts, self harming, etc - which would probably not help the parents who are on the quest to get diagnosis. Although that could be also a suggestion, that they have two separate units to CAHMS - one for general diagnosis referrals - and another for immediate help/advice.

The big problem for us was that fact - that there is no service to help with ASD once diagnosed - that you are only referred to CAHMS for them to aid diagnosis - I know while we we attending the sessions - the CPN's said that they are not experts in ASD's that there is no provision or support - that CAHMS are only there to help identify and treat (therapy) a specific problem, like OCD's etc - that Autistic Spectrum disorders can not be treated and therefore there is nothing they can do with the general day to day living/behavioural problems - they just suggest joining a support group and contacting the NAS.

Things like self-harming, aggression etc - they only have limited advice - the CPN actually saw my daughter in many situations like this - and offered lots of different advice and suggestions - at the end she said how useless she felt because she had told me everything she had learnt to help these situations and realised that it was meaningless.

But surely there should be someone somewhere that should be able to help with something even if it's just support and advice, that it shouldn't have to be the parents constantly having to harass their gp's and spending hours on the phone or writing letters trying to get some help for their children - sometimes it's so hard to keep fighting and pressing people - it also leaves the parents struggling emotionally too - and who looks after them?

Take care,

Jb

av16 · October 26, 2008

I would agree that time taken is far too long. We were referred when DS was still 5. assessed for ADHD after a years wait, they said no hasn't got that so waited 18months before assessed for AS. It took so long because they 'lost' his papers and I had to make a formal complaint, involve MP etc. to get things moving. In the meantime he was getting into more trouble at school, had 2 exclusions which could have been prevented if diagnosis was quicker. After diagnosis they just said more or less goodbye. He did have some sessions with a psych. to help with anger management but this was because we asked. He has only seen someone since because of his behaviour since starting secondary school in Sept and I do have to say they have been quick in seeing him but it was a very serious situation.

It would be nice to have an 'annual review' at the very least just to see how things are going. In what other situation would you diagnose something which has a major impact and then say that's it, goodbye. :unsure:

Karen A · October 26, 2008

:thumbs: Thanks all.I will read through all of the comments and attempt to come up with a list of what I think are the main issues.

The posts confirm what I was thinking.CAMHS are not doing well in many areas and perhaps we are very fortunate indeed.

Please do keep posting as I have at least a couple of weeks before I need to come up with a list of the major issues.

Thanks again you are all great.Karen.

sueeltringham · October 26, 2008

Just a quick reply, but our experiences.

The 3 D's:

Diagnose (but couldn't clinical psychologist was unable to explain or interpret)

Discharge (we were told we 'the parents' were now our son's therapists and it was down to us!)

Dire, disorganised (we were not told about our final diagnosis appointment until I found out by accident the night before)

Trying to find something positive to say. I have heard some positive reports from a friend, but sadly that was not our experience. Oh, and if we need to be re-referred to this service, we will have to go via our GP and wait 8 months AGAIN!

Sue

teachermum1 · October 26, 2008

Once we actually got taken on (J was referred by consultant paed at 3, but they don't see kids under 5), the first psychiatrist was nice but only able to offer medication for the ADHD. We declined meds so 6 months later were written to and told we'd be discharged as we didn't need anything else from them, but things were at crisis point so am glad that I got back in touch and said we wanted to trial meds, at which point we met...

The second psychiatrist. Who noticed that J actually had autism as well as ADHD and who has been an absolute godsend in terms of getting the ADOS and correct dx sorted, filling out Blue Badge and DLA forms, attending reviews at school etc. etc. She's really good and perhaps she is unusual in that she actually seems to be bothered about J getting what he needs.

Having said that, we only see her for J's ADHD meds and apparently most parents of 'just' ASD kids just get the dx and a goodbye - so we only get seen because of the meds. There are no other services on offer. She gives advice when we go or if I ring, but there's no services for ASD kids/ parents.

I agree with Js mum about out-of-hours advice and easier access to therapies.

Karen A · October 29, 2008

Hi All.I have come up with a list based on all of the helpful comments you have made.

I thought about adding the complete lack of provision for adults with AS within adult services on to the list as I know it is a regular topic on ''Beyond Adolescence''.

Please take a look and let me know if I have missed anything.Karen.

I am a member of an internet Forum for parents of children with ASD, adults with ASD and other interested individuals. The Forum has members from various parts of the country. Some Forum users are in the process of seeking an assessment or initial consultation. At the other end of the scale some have teenagers who are funded by the LA for provision in specialist educational residential provision which provides a 24hour curriculum. Some children and teenagers also have Co-morbid conditions, related conditions or a dual diagnosis alongside ASD.

In order to obtain a very rough idea regarding the important issues of concern on a National basis I put a post on the Forum asking for experiences of CAMHS and inviting people to suggest what the major issues are for them.

The main issues identified by respondents were :-

? Complaints about not being treated with respect. Individuals would like to be treated with dignity and honesty. They expect confidentiality to be maintained. They also wish to be treated as informed partners in their child?s care.

? A lack of awareness, knowledge and training amongst CAMHS staff regarding ASD and Co-morbid conditions. Advice is given and support provided that is unhelpful due to a lack of understanding of specific needs. Universal parenting programmes are utilized that are not tailored to the needs of parents with children who have ASD. Staffs lack awareness regarding how to effectively communicate with children with ASD. Parents would like information regarding strategies that will work.

? Long waits for initial assessment with regard to ASD.A lack of information regarding waiting times and further delays beyond the initial waiting time suggested .Parents complain that they need to nag professionals repeatedly to be heard. Some children deteriorate and become stressed whilst waiting whilst others are excluded from school.

? After Diagnosis parents frequently complain that no support or follow up is provided. Even a yearly review would be appreciated. Some children and adolescents do receive limited input which is usually related to the prescription and monitoring of medication [E.g. for ADHD or prescription of melatonin].Medication may be prescribed in some cases but little else is offered.

? If a crisis occurs a new referral is needed via the GP. There may be another long wait to be seen. Parents complain that there are delays in obtaining appointments where there is an urgent need. Some CAMHS do not appear to have any system for establishing the urgency of need. Parents suggest that some sort of a system for prioritising the need to be seen would be useful.

? There are comments regarding a lack of communication and rapid staff turnover resulting in a lack of continuity.

? Parents would like more family support, counselling and art and play therapy to be available.

? Social services, education and health are more concerned about avoiding costs to their own budgets than in providing appropriate provision. More interagency work is needed so that professionals work together to help children.

? Training in Mental Health and specific conditions is needed in schools for staff.A recognised CAMHS link with each school would be useful.

? Better crisis intervention is needed. Police station cells and secure units are not appropriate placements to meet the needs of young people with mental health needs when parents are in a crisis situation.

? The duty out of hour?s service does not provide appropriate support in a crisis because the team know very little about Mental Health issues.

? Early intervention would be far more helpful than crisis support .A crisis seriously impacts the child and family.

NB the question marks are bullet points on my original but have come out as question marks here.Karen.

Edited October 29, 2008 by Karen A

Babylicious · October 29, 2008

My dealings with cahms are that they are abysmal and too slow n treat the parent like an idiot. I had been back n forth with my son and about to get the diagnosis id had verbally in writing and also meds for my son and that cahms guy left n ive got another n he wants to go all the way back to square one and start all over again after ive already gone thru it for over a year and in that year been close to breaking point...now this guy is saying o maybe you didnt bond with him, might it be your parenting skills etc etc n wont even acknowledge the other persons notes...im very close to asking for a referral to someone else cos his whole attitude and demeanor stinks. Cahms people ought to show the parent and child more respect, accept the parent knows the child better than anyone else and also that 20minutes in a fake setting aint enough to diagnose a child.

Sorry bit of a rant but at the mo ive nothing but contempt for cahms.

you took the words right out of my mouth :wallbash:

cmuir · October 30, 2008

Hi

My dealings with CAMHS hasn't been a positive experience. I consider myself to be 'on the ball', fairly articulate, etc (gosh, that's sounds arrogant!), yet I've been made to feel like a complete muppet! My son has AS and may have a mood disorder, yet they categorically will not acknowledge this, despite other professionals advising them of this. Instead, they've repeatedly chosen to point the finger at me and ask ridiculous questions over and over again eg how was your childhood?, was your pregnancy planned?, how was your pregnancy?, and have also insisted on doing a family tree twice! To be frank, I object to this type of psycho-babble and me being assessed more than my son. I completely understand that if a child is behaving in an extreme way, then to some extent some initial suspicion should be directed at the parents. Unfortunately, although I've jumped through their various hoops, they don't seem able to get past the finger-pointing. I've found the various sessions with CAMHS incredibly stressful so much so that I actually requested that my son be discharged from them. I'd simply had enough. I also made a point of writing to them detailing why I was requesting a discharge (they neither acknowledged my son's problems or attempted to address them). They asked to meet with me and the meeting appeared to go reasonably well, yet they sent a letter to all and sundry saying that I have issues with trust which makes it difficult for me to concur with their recommendations. Needless to say, I wouldn't have anything to do with them in future.

Caroline

Karen A · October 30, 2008

Hi

My dealings with CAMHS hasn't been a positive experience. I consider myself to be 'on the ball', fairly articulate, etc (gosh, that's sounds arrogant!), yet I've been made to feel like a complete muppet! My son has AS and may have a mood disorder, yet they categorically will not acknowledge this, despite other professionals advising them of this. Instead, they've repeatedly chosen to point the finger at me and ask ridiculous questions over and over again eg how was your childhood?, was your pregnancy planned?, how was your pregnancy?, and have also insisted on doing a family tree twice! To be frank, I object to this type of psycho-babble and me being assessed more than my son. I completely understand that if a child is behaving in an extreme way, then to some extent some initial suspicion should be directed at the parents. Unfortunately, although I've jumped through their various hoops, they don't seem able to get past the finger-pointing. I've found the various sessions with CAMHS incredibly stressful so much so that I actually requested that my son be discharged from them. I'd simply had enough. I also made a point of writing to them detailing why I was requesting a discharge (they neither acknowledged my son's problems or attempted to address them). They asked to meet with me and the meeting appeared to go reasonably well, yet they sent a letter to all and sundry saying that I have issues with trust which makes it difficult for me to concur with their recommendations. Needless to say, I wouldn't have anything to do with them in future.

Caroline

Sorry you had a rough time.Stories like yours are the ones that answer the question ''Why might people not be willing to request support from CAMHS ? ''.

I have to say we have had an interesting time ourselves.We actually have an excellent relationship with the people who support us.We have been extremely fortunate in having a level of support that is exceptional compaired with anyone else on the Forum as far as I can gather.OH and myself have weekly support as does our DS.

However we have had an interesting journey.I had recognised compex mental health issues when Ben was very young and have always been open about that fact.

Having been supporting ourselves and Ben on that basis for two years a 3di was suggested by professionals as Ben wanted to know if he had AS.

Much to the surprise of the professionals Ben has AS after all.

Even the best professionals can be surprised.Karen.

Edited October 30, 2008 by Karen A

cmuir · October 30, 2008

Hi Karen

I'm on a roll! 'And another thing...!'

I perhaps should have added that they recommended that my son and I took part in a 3 month programme. I felt I had no choice and so agreed. However, it was based on the Incredible Years Programme devised by an American Clinical Psychologist. I actually made a point of emailing her and asked about the suitability for a child on the spectrum. She advised that the programme was NOT specifically devised for them, but there could be some benefits. I found that the programme had minimal benefit and given that it was a 'one size fits all' programme not designed for ASD kids, it was a lot of stress for not a lot in return.

The interesting things about the programme was that it was setup in a manufactured environment, unlike home or school and so my son didn't behave in the same way. Had CAMHS seen R in his usual environment, they would have seen a whole lot more. Yet, this was something they refused to do. I think this is imperative in order to see how things really are.

C.

vicbee · November 10, 2008

Hi Karen

I'm on a roll! 'And another thing...!'

I perhaps should have added that they recommended that my son and I took part in a 3 month programme. I felt I had no choice and so agreed. However, it was based on the Incredible Years Programme devised by an American Clinical Psychologist. I actually made a point of emailing her and asked about the suitability for a child on the spectrum. She advised that the programme was NOT specifically devised for them, but there could be some benefits. I found that the programme had minimal benefit and given that it was a 'one size fits all' programme not designed for ASD kids, it was a lot of stress for not a lot in return.

The interesting things about the programme was that it was setup in a manufactured environment, unlike home or school and so my son didn't behave in the same way. Had CAMHS seen R in his usual environment, they would have seen a whole lot more. Yet, this was something they refused to do. I think this is imperative in order to see how things really are.

C.

I just want to add my POSITIVE experience with CAMHS so far. My expectations of this agency was not high after hearing so many bad stories. so i have been pleasantly surprised by my experience of them so far. My intitial appointment was about 2 months after referral from GP. We had just returned from living in Spain for a year and i had so much to do to get the ball rolling. i dont know whether it was down to the fact that my daughter has major eating difficulties and her weight has plummeted that they have been on the ball but I have had appointments through really quickly, ALL of the staff have been excellent with me and my daughter, and they dont have the prescribed amount of staff in place either. I do however think I dropped on with the lady who is doing all the assessments for the ASD side of things because she told me she has just moved to our CAMHS and is building up her caseload. She is hoping to complete her assessments and provide diagnosis (or not - whichever way it goes) by Christmas. with regards to the eating side of things - they could not do enough to support us. they insist on weekly weigh ins until she was seen by the paediatrician (last week) and dietician (this week) but they have always been at the end of a phone when ive been at my lowest with regard to my daughter's behaviour which has been more worrying sometimes than her weight. How I will feel about them in a month or so's time if i dont get the outcome i want from this - I dont know but I have to say that so far i am extremely happy with the service i have received. Possibly it has been easier because my daughter is 12 and we cant just be sent away and told to wait till she matures!! I think however that the answer may be that someone up above is just giving me a break for once!!!! But yes, my story positive so far but i really feel for everyone who hasnt had a positive experience in these extremely difficult situations as a parent, when you are crying out for help and not getting it.

fallgyrl · November 10, 2008

Hi Karen

Not sure if my experience is usual but, despite J's recent diagnosis, I have no experience whatsoever of CAHMS. They seem to be treated as a bit of an irrelevence where we are with Social Communication assessment process instead carried out by PCT's multi disciplinary team. The down side (I thought) was that it took what seemed ages to get through all the observations and meetings, but at least J was seen in a range of different environments and by a number of professionals. For me, this was the most important thing, as I was never reliant on the subjective judgement and potential dismissive attitude of just one person.

Apparantly the Cahms have a 12 month waiting list for general mental health issues, but dont have much expertise in Autism anyway (as admitted by one of Clinical pschologists we saw). There is no after diagnosis support here, and a lack of access to support programmes such as anger management sessions. Cahms MAY?? be able to provide some info on general behaviour management direct to the school and our SALT is currently investigating this, but I'm not sure it will add much to the info we now have given that there has been so much intervention and involvement now from other professionals.

Vicky

Karen A · November 11, 2008

:thumbs: Thanks for all of the posts.

I have made a power point using the information provided by you wonderful people and the big day is tomorrow.

I have used the list posted earlier and added a couple of things that I will post too in a mo.

I am also doing some other things and Ben is presenting an amazing power point that he has written.So it is a very very big day for us. :whistle:

I added the bits on at the end beacuse I know they are very big issues on the Forum.I made a guess that the lack of a mention had more to do with where the post was put and/or how it was worded than anything else. Karen.

Edited November 11, 2008 by Karen A

Karen A · November 11, 2008

I am a member of an internet Forum for parents of children with ASD, adults with ASD and other interested individuals. The Forum has members from various parts of the country. Some Forum users are in the process of seeking an assessment or initial consultation. At the other end of the scale some have teenagers who are funded by the LA for provision in specialist residential provision which provides a 24hour curriculum. Some children and teenagers also have Co-morbid conditions, related conditions or a dual diagnosis alongside ASD.

In order to obtain a very rough idea regarding the important issues of concern on a National basis I put a post on the Forum asking for experiences of CAMHS and inviting people to suggest what the major issues are for them.

The main issues identified by respondents were:-