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Hi, my name is Bobbybiscuit! - Granddaughter with mental health issues

BobbybiscuitBobbybiscuit Posts: 8Member Listener
edited May 1 in Parents and carers
Hello to you all. I am a carer/supporter for my granddaughter. She lives  with us. 

Our correct issue is that Shannon does not get off to sleep until 2am to 3am and despite varying types of medication situation has not improved. Shannon used to be under Childrens and Adult Services (CAMHS) until age of 18 but continued to 20 and has now been discharged back to GP who wont deal with her because of the level of medication she is on. The psychiatrist recommended adult mental health for her but the managers refused the referral. Now the GP is writing back to CAMHS saying he wont deal with her. So the saga of not getting a proper sleep pattern continues. Any advice would be appreciated. 

Just to top it all dept of work and pensions have withdrawn her PIP so I have submitted a first stage appeal including a letter from her former psychiatrist. This has left her in a pickle financially and me aswell as I took out a loan in my name to get her an automatic car. her PIp was funding the car loan and also car insurance which you can appreciate it very expensive for a 20 year old. So I am paying about £115 per month out of my pension to keep her mobile. She cant catch a bus so I taught her to drive over a 2 year period before I funded driving lessons with a great instructor and she passed her test first time. Even now my grand daughter needs someone to go out with her except to her mums address or a friends which is close by to ours. So this has been a struggle but its important for her to drive as i wont be around for ever. Pip seems ok if your disabled but does not seem to apply for those with mental issues. 

any advice on both the issues would be appreciated

Replies

  • thespicemanthespiceman Posts: 5,291Community champion Disability Gamechanger

    Hello @Bobbybiscuit   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions. We guide advise and help new members who join the forum.

    I am so sorry to hear this. I know having mental health issues myself. Always this problem.

    The issues of using often services from councils can be a difficult one. As you have experienced.

    I have used mental health charities.   Your granddaughter deserves good mental health.  Wellbeing and some one who needs to be supportive and understanding.

    I used this one last time.  https://www.richmondfellowship.org.uk.

    Useful with floating support wellbeing and assistance with your granddaughters mental health.

    Also good with benefits and welfare.

    Please hope that might help.

    We have a new member of our team.  @MickConnon.  Who has a lot of knowledge and experience in mental health.

    I have tagged him. So  he can advise you further.

    Please can I add wish you well and your granddaughter.

    Pleasure to meet you.

    Take care

    @thespiceman

  • MickConnonMickConnon Posts: 56Volunteer community adviser Courageous
    Thanks @thespiceman, this is right up my street. Hi @Bobbybiscuit thanks for posting this as it shows that there has been a complete breakdown in communication. The first lot of people I would get involved would be the PALS (Patients Advice and Liaison Service). Your grand daughter still needs the support of Mental Health services and as for the referral being refused, that is absolutely disgusting. The fact that she is now aged 20, is irrespective and CAHMS should have done a handover to Adult services. This riles me as Mental Health problems are better managed when professionals are involved as it prevents relapses. Her needs are obviously complex and as such should not be left to her own devices and just dumped with no support effectively with you. This must cause you some concern and am happy to help you with this in getting her the right support as am quite frankly disgusted with services in how she and you have been treated. PALS will deal with your complaint on your behalf, The GP should be informed of this as he could easily refer her to MH services. An explanation of why she would not be taken under the Adult Services caseload needs providing as the Psychiatrist recommended this. 
  • April2018momApril2018mom Posts: 2,439Member - under moderation Disability Gamechanger
    Mental health issues are serious. Is there any therapists in the area or not? I’d start reading some books on mental health issues too. Maybe you should talk to a trained therapist or professional. Can you get a referral to mental health services for her? It might make a big difference in her coping abilities. 
  • MickConnonMickConnon Posts: 56Volunteer community adviser Courageous
    Absolutely @April2018mom Mental Health issues are very serious indeed. This is one of the reasons I decided to come on here and advise and if necessary rattle cages.  :p
  • BobbybiscuitBobbybiscuit Posts: 8Member Listener
    Just to update you after submitting a complaint to the Health Authority responsible for the handover to Adult Mental Health and a complaint to the GP. 
    a) Health Authority - a decision was made by Adult mental Health not to accept the referral from CAMHS. The reason being that she does not meet the criteria. Although the Camhs psychiatrist thought my grand daughter should be be  referred to Adult Mental Health apparently it was wrong for him to say to us that a referral would happen. They conclude that they acted correctly. 
    b) GP saw Shannon and said he was not happy with Shannon being on such high medication (Zaloron XL 200mg) night times plus other medication mornings.He reluctantly prescribed medication for Shannon's ongoing sleeping problems - 2 weeks of tablets - which did help. She does not get off to sleep until 2am or later. Doctor said she must do more exercise, have a shower every night . She was showering anyway and that made no difference. Exercise was dependant on someone going out with her but no one can due to her anxiety. 

    You will love this one, when seeing the GP my grand daughter clammed up when he was saying these things to her so I had to be her mouth piece which is not unusual. I do encourage her but she just cant explain things at all well. So he said he only talks to people where the patient is unable to speak. meaning my grand daughter could speak. That made her cry. He said though he would do a referral to Adult mental Health to review Shannon's medication because in his opinion its too high. What does he know that the psychiatrist does not know? Adult mental health refused to accept my grand daughter. My grand daughter is relatively stable at the moment with the medication she is on. Reducing it would be a major mistake. There have been some horror stories where this has happened resulting in changing people lives forever for the worse. Shannon still has her sleeping issues now the temporary medication has stopped. My granddaughter came on holiday in North wales with myself and my wife. They done there own thing on the holiday park. Plenty of exercise and fresh air and it made no difference to her sleeping patterns. So that proved the GP wrong. 

    Turning to the PIP reassessment,I looked on the internet for advice and for letter template which there was. I also obtained a letter from the CAMHS psychiatrist who went in to great detail and supported my grand daughter's claim for PIP. Some nearly 3 months later, the result came back and PIP was reinstated for 18 months only and subject to review after that date. 

    Regarding going forward for granddaughter re mental health, we had adult social services team member to come out and see my garnd daughter which was thanks to the Psychiatrist. I have explained everything to her and she is going to see what external support services are available to Shannon that we can tap in to. Watch this space... the story will continue....
     
  • thespicemanthespiceman Posts: 5,291Community champion Disability Gamechanger
    Hello @Bobbybiscuit  Thank you for contacting the community.  Giving the community a update on your granddaughters mental health.

    I know the problems are difficult and never easy to deal with and to accept. Especially those decisions from medical professionals those opinions we supposed to acknowledge.

    Having walked a mile in your shoes my own personal circumstances.

    I would just like to offer am always here to give reassurance and offer what support I can give to you and your granddaughter.

    As a member of our community. You are important and valued.

    I would like to add one important thing to look at consider if that is some thing you might wish to do.

    In my previous post the charity I used.  Every one is entitled to good mental health no matter who ever they are.

    Council services are fine but I have used mental health services from charities found the response a positive one.

    Had bad experiences from council services have to say that sorry to tell you. Understand every one has choices but sometimes these charities have such a net work and a vast knowledge, experience.

    Always useful..  Look at every thing connected plus wellbeing and health.

    Often do take clientele with other problems. One other thing might not be in your area.  Might be worth having a look on line for any thing in your area.

    I will put the link again if that helps you.

    https://www.richmondfellowship.org.uk.

    One other point I thought you would like to know I have sleeping issues myself long term.  Due to my illness never easy every day.

    In fact I do believe  most members of our community have sleeping issues with mental health  problems.

    What I did though was contact the above charity and used their knowledge and expertise on sleep.  As part of floating support you will get advice, guidance on medication and other aspects of welfare and wellbeing. Including benefits.

    Enrolled also spoke to the local community health unit.  Called a wellbeing service.  Take on clientele with range of illness and disability.  Changed my perceptions on wellbeing, diet, fitness.

    They work with your granddaughter.  On a individual basis on a time to suit her. All trained staff and free.

    I gained a lot of valuable knowledge, expertise on my own mental health and now use that to my own needs.

    Have nutritional and food qualifications.  

    As for my sleep have a structure a plan for sleep please may I suggest that. Taken me a long time to get the right structure of place and it is time that is needed.

    There are lots on line of advice and guidance.  Including this forum.  Could be anything. For example constant use of caffeine like in chocolate or cocoa products does effect sleep as does cola.  Tea and coffee as well.

    Other aspects are electrical devices too close to bedtime food and the room  being bright or too dark.  

    Have done a lot of research for my own needs and use certain things do work well.  Milky drinks with honey stirred in. 

    Whole grains beans and pulses.   Honey whole meal bread another one. Has an enzyme in it called Tryptophan . Lean Turkey, Chicken and Pasta all helpful. Use wholegrain variety.

    I wish you well I hope anything I can advise or be supportive with has helped.

    Wish you well 

    Take care.

    @thespiceman
  • BobbybiscuitBobbybiscuit Posts: 8Member Listener
    thank you for your advice. very helpful
  • thespicemanthespiceman Posts: 5,291Community champion Disability Gamechanger
    Hello @Bobbybiscuit   Thank you very much kind words much appreciated.

    Please keep in touch anytime how are you and everything .

    Take care.

    @thespiceman
  • April2018momApril2018mom Posts: 2,439Member - under moderation Disability Gamechanger
    Hello @Bobbybiscuit  Thank you for contacting the community.  Giving the community a update on your granddaughters mental health.

    I know the problems are difficult and never easy to deal with and to accept. Especially those decisions from medical professionals those opinions we supposed to acknowledge.

    Having walked a mile in your shoes my own personal circumstances.

    I would just like to offer am always here to give reassurance and offer what support I can give to you and your granddaughter.

    As a member of our community. You are important and valued.

    I would like to add one important thing to look at consider if that is some thing you might wish to do.

    In my previous post the charity I used.  Every one is entitled to good mental health no matter who ever they are.

    Council services are fine but I have used mental health services from charities found the response a positive one.

    Had bad experiences from council services have to say that sorry to tell you. Understand every one has choices but sometimes these charities have such a net work and a vast knowledge, experience.

    Always useful..  Look at every thing connected plus wellbeing and health.

    Often do take clientele with other problems. One other thing might not be in your area.  Might be worth having a look on line for any thing in your area.

    I will put the link again if that helps you.

    https://www.richmondfellowship.org.uk.

    One other point I thought you would like to know I have sleeping issues myself long term.  Due to my illness never easy every day.

    In fact I do believe  most members of our community have sleeping issues with mental health  problems.

    What I did though was contact the above charity and used their knowledge and expertise on sleep.  As part of floating support you will get advice, guidance on medication and other aspects of welfare and wellbeing. Including benefits.

    Enrolled also spoke to the local community health unit.  Called a wellbeing service.  Take on clientele with range of illness and disability.  Changed my perceptions on wellbeing, diet, fitness.

    They work with your granddaughter.  On a individual basis on a time to suit her. All trained staff and free.

    I gained a lot of valuable knowledge, expertise on my own mental health and now use that to my own needs.

    Have nutritional and food qualifications.  

    As for my sleep have a structure a plan for sleep please may I suggest that. Taken me a long time to get the right structure of place and it is time that is needed.

    There are lots on line of advice and guidance.  Including this forum.  Could be anything. For example constant use of caffeine like in chocolate or cocoa products does effect sleep as does cola.  Tea and coffee as well.

    Other aspects are electrical devices too close to bedtime food and the room  being bright or too dark.  

    Have done a lot of research for my own needs and use certain things do work well.  Milky drinks with honey stirred in. 

    Whole grains beans and pulses.   Honey whole meal bread another one. Has an enzyme in it called Tryptophan . Lean Turkey, Chicken and Pasta all helpful. Use wholegrain variety.

    I wish you well I hope anything I can advise or be supportive with has helped.

    Wish you well 

    Take care.

    @thespiceman
    Do they accept people with physical disabilities? 
  • thespicemanthespiceman Posts: 5,291Community champion Disability Gamechanger
    edited July 22
    Hello @April2018mom   In response to your question yes they do if you have mental health issues as well.

    You can self refer to the charity or ask your GP.

    As far as In do know do not operate in certain areas. I believe Scotland being one.

    Some areas as far as I do know have outreach workers or floating support.  If you apply will be assessed to see what they and how they can help and advise you.

    I mentioned this charity because .  After addiction no one tells you anything.  After care and the Doctor does his or her bit. They held me together and go support from them. Where ever I had moved to.

    Once joined MIND support services another one had problems, difficulties with .

    Council services appalling, soul destroying .  There are good staff in some of these services unfortunately it is not them but the whole system.

    I would get support from one member of staff maybe every two weeks to three weeks to see me.  CPN forget it.  Once applied supposed to got a CPN by the time she had found me and try to help was nine months gone.

    From the area and moved away.

    Obviously if things are not working for you and your not getting any support. You have to decide do I need to live here or can I move and to find out where the resources are.

    This is something had to do.  Five times . I live on my own no support so it was easy maybe but now still thinking where to go.

    Used Richmond Fellowship three years ago helped me a lot.  Got floating support a lot of help, guidance and advice on the long term benefit problems.

    Much mentioned in many posts.  

    Hope that helps you please give them a try.

    Wish you the best.

    Take care.

    @thespiceman


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