Don't know what to do

Hi hope everyone is as pain free as can be were to start my daughter who suffers with fibro cf also suffers with ocd and a phobia of vomiting not just her anyone near her she is attending a little group on Monday 4 hours Tuesday 4 hours Thursday two hours for school work there are only 5 of them they all suffer with anxiety but my daughter struggles with getting in some times due to pain I have a meeting on Monday with camhs they would want to send her to a hospital school in September to do her last year it is full time I am my daughter have said we have to be realistic it's not going to happen she's all ready really depressed and crying all the time as she can't do the GCSEs that she wanted to hardly sees any friends I can understand the people she's under saying she's not socialiseing with other children but I think the only option is home school for a year

9 Replies

  • Hi Hollie121

    I am so genuinely sorry to read this, and I was wondering if there was any scope for negotiation with camhs over the school hours that she can attend? If there is any possibility of reducing her school hours it may be beneficial to negotiate with them?

    My line of thinking was that maybe she could attend 'X' amount of hours at school and then top this up with schooling form home? I really do not know how it all works to be honest?

    I do not know if you have read this but I have pasted the link to the NHS Choices cache on camhs:

    I have also pasted a link to YOUNGMINDS a charity that says it is the voice for young people's mental health and wellbeing. It may be worth talking to a group like this also:

    I want to sincerely wish you both all the best of luck and please take care of yourselves.

    All my hopes and dreams for both of you


  • Hi there, sorry to hear that your daughter is suffering so much, she has such a lot to cope with for a youngster. We are all different and you know your child better than anyone else. Maybe your daughter could try the hospital school for a few weeks and see how she gets on. You will never know unless she gives it a go, I know that's easier said than done. Home school has its benifits but is so isolating for a youngster, hope you find a solution and that things improve for her, take care.

  • At least you have the option of hospital school, is it something she can dip in and out of as she feels well enough? You don't have to take all your exams in one year so she could plan for some this year and some next to take the pressure off. Home schooling doesn't get much government support but there seems to be a huge network of home schooling parents who arrange social events too. Shea could top up her socialising by joining a local club and study something that is not exam focused but more about friendship. I did a vege cookery course which was great fun. My wife and I keep meaning to do the gentle massage for couples one.

    Good luck remember it's all about pacing 😃

  • There is a company called academy 21 who work with children who cant go to school, and they teach them over the internet, maybe that would help?

  • Hope your daughter gets the help she needs, some education is better than none but school is more than just learning things.

  • Hi

    Please follow you motherly instincts. I had a year off of school due to illness and hospitalisation. I bought books to aid my studies and studied alone every day that I could. My teachers too thought I wouldn't get any O levels, I proved them wrong and surprised myself too.

    If your daughter feels she can get better and study at home, she should be given the chance. I went to boarding school and hated it, it can effect you leaving home too early in life and if you're not well even more so.

    I do hope that you and your daughter feel better soon.

    Best wishes.

  • Thank you so much

  • HI Hollie

    I am so sorry to read of the difficulties you and your daughter are having. I can totally relate to your worries for your daughter not being able to go to study for longer than you know she is able to manage.

    My son has had ME since he was 8,he is now 20.To cut a long story short-of a very difficult time-looking back, it was a battle to get the right help and support.Those that thought they knew best in actual fact they knew nothing of how my son was affected or how he should be cared for. As the sudden disabling illness was new to me, I myself was at that time uneducated about it and relying on professional's to take the lead,but some interventions proved costly for my son's health such as attending school for longer than he could manage, and participating (albeit barely, as he was partially paralysed) in recommended physiotherapy at the onset of the illness,whch I know now is a definite no no.

    As I cared for my son and became to understand his condition,I instinctively knew what was best for him.

    When he was in year 8, I decided to home school him.Support at that time for me to do this was limited,one reason against it, being that he would not have peer support or interaction with others. Unfortunately there was no other choice to make for his health,as there was no other support in place to accommodate his condition.

    Allowing my son to rest when he needed to and study when he was able to, was all that was needed to aide his recovery from severe ME. He still suffers with ME and ocd (germs/contamination) but he now goes to college 4 days a week (when he can), thankfully the college have been very understanding.He has done really well,both academically and socially,but he could only have achieved this when he was ready and able to.

    You yourself know what is right for your daughter,but this will be questioned by the authorities so you have to communicate with certainty.

    The tymes trust is a young people's ME/CFS charity.They are excellent and actively get involved to support an individual case.

    I know what an emotional time you are having and you will look back on it wondering where you found the strength,but you can do this.Keep going,it will get easier.

    Very best wishes to you both xx

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