OCD Action

DesperateMum
Member

Hi, I am new to this forum and the mum of a beautiful teenage daughter who is suffering from severe, debilitating and crippling OCD and depression. She is currently a patient in an adolescent mental health unit where the doctors refuse to give her a diagnosis of OCD and depression. As a result, my husband and I don't feel that she is receiving the right care and treatment and she has been there for 3 months already.

Our daughter was given this diagnosis by our local CAMHS Psychiatrist 3 years ago and this is now being disputed by the team at the unit. They have completely stopped her Prozac which was helping her depression and since then she has spriralled into a deep hole where she cries most of the time. They also think that her OCD like symptoms are not OCD and so she is not receiving any cognitive behavioural therapy.

We are going around in circles whilst our daughter feels worse, angry and more distressed at the lack of any recognition of her condition. My husband and I feel that the medical staff just talk in circles around us and don't actually get to the heart of our questions and requests. We feel like we are losing our beautiful girl.

I am a fellow OCD and depressive sufferer, now extremely well managed on medication. My husband lived through this with me and supported me. We have asked for a second opinion which is being organized, but may be a while before she can be seen by a specialist. However, our daughter was told that irrespective of the second opinion, it would not change her management.

Is there anything else we can do in the mean time to change her outcome for the positive please?

Wed Mar 17 2010 15:15:27 #
Truddles
Member

Hi Desperatemum,

Welcome to the forum.

I'm so sorry to hear of the problems you are having accessing treatment for your daughter. I thought that I was having problems going round and round in circles trying to access treatment but being as old as I am at least I've had a life.

To deny a youngster the appropriate care and treatment so that they can get on with their life is unforgivable.

Your daughter was originally diagnosed with OCD and depression by a psychiatrist and yet the team she is with now have withdrawn her Prozac and say she hasn't got OCD or depression. Have they then said what it is that they think she has. Also have they not observed her downward spiral and what do they attribute this to?

If you do get a second opinion the team cannot refuse to acknowledge the diagnosis and if the second opinion doctor says her management needs changing then that is what they have to do.

It sounds as if they are winding your daughter up and making an already bad situation worse.

Have you tried contacting PALS for their advice? Apart from that I don't know what to advise as like your daughter I'm stuck not receiving the help that I need.

It must be really stressful for you but there are always people on the forum that you can talk to. We're a friendly bunch and always try to support each other. If it's quiet on the Carers forum do what others do and use the OCD forum as that usually has someone on line.

Best wishes

Trudy

Wed Mar 17 2010 16:06:40 #
Wombat140
Member

If PALS get nowhere you could try contacting the mental health charity MIND. They often know how to get things sorted out. That's 0845 766 0163 or info@mind.org.uk or
Mindinfoline
PO Box 277
Manchester
M60 3XN

SANE, the other big mental health charity, might be worth trying too. If all else fails you could write to your MP and ask them to make waves.

Best of luck to both of you.
Wombat140

Wed Mar 17 2010 20:04:22 #
DesperateMum
Member

Thank you so much for your replies. I did contact MIND by email yesterday but have not heard back yet from them and I shall make note of PALS as well.

It is incredibly frustrating and renders one so powerless to help. We are her parents. We have lived with her for 16 years. We are intelligent and educated people. Why do the doctors not listen....and I mean truely listen and take on board what we are saying? I don't get it!

Thu Mar 18 2010 11:38:01 #
Joel
Key Master

hi desperateMum, you may also want to talk or Jude, (OCD Action's advocacy Manager)or post a message on the advocacy section of this forum. Jude is out and about today and tomorrow but she will get back to and she may be able to help. You can reach her on 0845 390 6234.
Thanks
Joel

Thu Mar 18 2010 15:23:51 #
DesperateMum
Member

Joel, Thank you very much for this info. Much appreciated.

Thu Mar 18 2010 16:40:12 #
Advocate 1
Moderator

Hi Desperate Mum,

I have read your post re your daughter's position. In order to see if I can help I would need further informtion from you. Certainly your daughter has rights but these depend very much on her status as a Voluntary or detained patient.As a minimum she should be informed and consulted about her care and treatment and she a right to a second opinion. It might be worth us having a chat,please feel free to call me on the Advocacy line number 0845 3906234.
Regards
Jude

Fri Mar 19 2010 14:33:34 #
Unregistered

Dear Desperatemum
Please don't feel you are losing your beautiful girl, she is there just the same but she is just very unwell at present. With the right care and treatment she can be well again.
I have spent many months in psychiatric units over the course of my life and it has taken a long time for the professionals to find out what works for me. We are all individual, what works for one will not necessarily work for someone else, even if they have similar symptoms. Sadly, psychiatry is not an exact science and it takes time and patience to work out what is the best form of treatment for each individual.
It is natural as a mum with OCD to think that what has worked for you will also work for your child but this is not necessarily the case. I too am a mum with OCD and depression, now stablised on a low dose of Seroxat and able to live a fulfilling life, but my son who was also diagnosed with OCD, presumably inherited from me, reacted differently to the treatment which helped me.
It sounds as though you have lost confidence in the medical team who are caring for your daughter which is very sad and this does not happen without cause, however it does not necessarily mean she is not receiving the right treatment. It sounds as if the management of your daughter is being reviewed and that your request for a second specialist opinion has been taken on board.
I understand that you are desperate to see some visible signs of improvement and that you feel powerless to help. In my opinion the best thing you can do for your daughter is to provide consistent, reliable support, without pressure and not say anything which could cause her to lose confidence in her management team. Also, it is vitally important to look after yourself, your physical needs, diet, exercise and sleep because your unconditional love and support will be needed and to exhaust yourself with anxiety at this stage will not help you or your daughter.
Of course you are intelligent and educated people, OCD and other thought related disorders affect intelligent people, this forum is full of highly intelligent members, but the problems we face are very complicated and despite vast advances in knowlege about how the brain works there is a huge amount waiting to be discovered.
If you are unhappy with the NHS and you have sufficient finance you could always consider the private option, for example The Priory which I believe has access to the country's top specialists.
The NICE guidelines will tell you what treatment your daughter is entitled to receive under the NHS and I have also found the Mental Heath Act Code of Practice useful, although not legally binding all care providers are expecterd to comply with it's guidelines and if they do not do so it would be considered detrimental in a Court of law.
I hope this helps, regards, Joyce

Sat Mar 20 2010 11:39:57 #
dan
Member

Hi Desperate Mum I have just posted as desperate Dan. If you have any energy left try this. I found the names of all the board members of our NHS in our case York & N. Yorks, chairman chief exec the lot. Spell out in no uncertain terms whats gone on what happening and you utter disappointment at what is or not happening say you want action and now. Include you local MP to receive the letter. Print them all off and post them all in our case 15. You will get a reply fairly quickly. Then dismiss the PC reply full of rubbish correct answers and write again requesting an urgent meeting with the chief exec (apparently it is your right. I also included my MEP and the Minister for health in both my letters. I have recvd my 2nd reply and a telephone call from the senior commissioning manager of the PCT stating what action is to happen. I am holding my fire for a couple of weeks to see what happens. If nothing substantial then I will write again and pester all 15 of them. If she can ask you daughter to sign a letter of consent to allow you to be given details of treatment etc. Otherwise they use this to say little. My sincere heartfelt sympathy to you. I am almost all fought out.

Wed Apr 7 2010 13:30:43 #