"Treatment of my daughter's depression highlights the need for change"

About: Leeds and York Partnership NHS Foundation Trust / Adult mental health Leeds and York Partnership NHS Foundation Trust / Child and adolescent mental health St Mary's Hospital / Young adult team

(as a relative),

My daughter was 17 when we embarked on this journey in late 2009 with a visit to the GP with concerns over depression, however it took until January before the concern had peaked and she was taken to our GP who felt that she was suffering from more than clinical depression. (She had made a suicide attempt by this point).

She then went on to have the following appointments:-

1. January 2010 Community Mental Health Team - it was felt she was showing signs of bi polar and referred on further.

2. February 2010 - Appointment with a psychiatrist at St Mary's hospital in Leeds, after assessment a diagnosis of bi-polar with hypomania. This meeting was very helpful and my daughter liked and trusted the doctor. Tests were needed as Lithium was to be prescribed with referral for CBT.

3. March 2010 - Appointment with psychiatrist to start medication, however, we were told on arrival that the consultant psychiatrist would not allow her to be treated or given the label of bi polar as such a young age, but no other option was provided other than to the support of her mental health nurse. We requested an appointment with the consultant to establish what was to happen next. Also provided a letter from school with details of her changes in behaviour which included an episode of mania to support the evidence, I feel this was ignored by the consultant.

4. April 2010 - Met with the consultant but my daughter had not slept for 72 hours and was very hyper on the day of the meeting, she was also angry as she felt that the consultant had removed her ability to obtain the help she so desperately needed. This meeting was horrendous to say the least, my daughter left in floods of tears and very angry saying that she felt that she had not been listened to and that he was only concerned with trying to find a trigger.

His comments to me were that he felt she was not bi polar and that her problems were psychological and personality related but he would not be making a referral to the psychology team at this point. I stated my frustration and asked the question "is it because of her age?" which he denied. Given that she was having serious issues sleeping, unable to function on a daily basis and was forced to give up the first year of sixth form due to her condition, we were highly dissatisfied.

I arranged for a private psychological assessment and report to be carried out which was very expensive ( whilst I do not in least begrudge paying for this, we were in the fortunate position of being able to find the funds, however, this is not a luxury afforded to everyone and I feel it is inexcusable that we were forced into a position of arranging it through desperation to help my daughter). This took a number of weeks to complete as she needed to be assessed thoroughly. It was ready by July 2010.

The outcome was a diagnosis of bi polar II and that she had no psychological or personality disorder. This was sent on to the hospital and the GP, it took a lot of chasing to finally get an appointment in August 2010.

In the meantime I contacted PALs for support and information - I will not make much reference to this as they cannot be faulted in any way and were absolutely fantastic in their understanding, support and assistance as and when it became necessary. They have been invaluable and greatly appreciated.

5. August 2010 - again told it was inconclusive and he was reluctant to provide medication, but would give her something temporarily for three months as a trial. Apriprazole was recommended and we agreed only because of the few side effects (he did say that it may have a placebo effect!) we have subsequently been told that this medication actually made her depression worse, which was obvious as she has spent the last three months almost permanently depressed. A referral was to be made to the psychology team for CBT.

Further contact with PALs as we were at our wit's end as my daughter has not improved at all and has now missed nearly a year of school without any practical or medical assistance other than her mental health nurse (again, she was lovely and my daughter felt she benefited from having her there to help, she also agreed that my daughter needed help).

A second opinion was sought and at the beginning of October she was seen by a bi polar specialist for assessment.

After this meeting we asked PALs to have a transfer of psychiatrist as we felt that after so many assessments and nearly of year of monitoring, even if another doctor agreed she was bi polar, nothing would be done to help her. This was arranged very quickly and efficiently, again thank you to PAL.

October 2010 - meeting with the bi polar specialist psychiatrist who agreed with the psychological report and confirmed bi polar II, she is now on medication suited to the condition and this will gradually be increased to the correct level until she is in recovery. This current doctor is lovely, very understanding and most importantly listened to everything my daughter told him and in my opinion has treated the whole person.

Due to her age, this has taken a year to resolve, the system needs to be changed as mature adolescents are different to adults and should be treated accordingly. I really do not want another teenager to go through the experience my daughter has endured over the last 12 months due to the system not being able to cope. They should stay in the adolescent until treatment begins or be referred there when they are close to 18. Both myself and my daughter feel that the Leeds mental health trust let her down badly and unnecessarily made her suffer for a whole year.

She had said herself, that without the support and love from home and the help from PALs that the outcome would have been awful, she feels she would have made further attempts on her life. Please look into providing better services for this very vulnerable age group. (This story has been posted with the full agreement of my daughter who is now 18.)

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Response from Hannah Smith, YoungMinds

Hi Tracey, It sounds like you have been having a really tough time trying to get help. If you ever need any advice or support please call our parents helpline on 0808 802 5544, we can offer confidential support and advice and a free hour call back with a counsellor or a psychologist. Unfortunately, this is a case we hear all to often at YoungMinds. We are currently campaigning to change this so that young people do not fall through the system between the ages of 16 and 19. You can find out more here. Please do have a read. We work with young people with mental health problems up and down the country to campaign for better services. If your daughter would like to join in with our work and campaign for change please do not hesitate to contact me. All the best, Hannah
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Update posted by tracy1 (a relative)

Dear Hannah, thank you so much for your post.

I have looked at your site and wish I had known about this months ago, even a phone call to Mind did not provide this information. I will mention it to my GP as I am sure it would be very useful for future patients and their families to have this contact. It is an awful situation and not only for the patient but it can tear families apart.

I will keep the number as it may come in useful during her initial treatment as I understand it can be a rocky road until she becomes level.

Thank you again, it helps to know others are campaigning for changes in this area.


Response from Leeds and York Partnership NHS Foundation Trust We have made a change

My name is Dr Guy Brookes and I am a Consultant Psychiatrist and the Associate Medical Director for Adult Mental Health services within Leeds Partnerships NHS Foundation Trust.

Thank you for taking the time to give us such a considered account of you and your daughter's journey through services. It sounds a fraught and exhausting twelve months for you both and I am sorry that you have both had such a difficult time.

I would like to start by saying that I am heartened and pleased that things are now looking more positive for your daughter. However, I am personally very sorry that you feel that our services have not always met your expectations through this period.

I realise that you have felt a great deal of frustration whilst trying to secure appropriate help for your daughter. I am obviously pleased that at times our Trust has responded to you with valuable and empathic support but I am also concerned that you have been unhappy with other elements of the service we have provided for you and your daughter.

As a Trust we are committed to providing high quality safe clinical service and always listen very carefully if people tell us that the services we provide could be improved in any way.

I am not sure that it is appropriate to go into the specifics of your daughter's initial care here, so I would very much like to meet you and your daughter, or to speak to either of you over the phone. This can be arranged through the PALS team if you wish.

I would welcome the chance to give your very detailed account the personal response it deserves. I have already begun speaking to the staff involved to get a better understanding of your daughter’s journey through our services.

Some of the other points you have raised can and should be explored right away. As you may be aware, Leeds Partnerships NHS Foundation Trust has an Adult Directorate which currently provides mental health services to working age adults from age 17 – 65. Our Older People’s Directorate currently provides mental health services for people over the age of 65.

Mental health services for people under 18 are usually provided by Child and Adolescent Mental Health Services which are part of a separate Trust. Although people can and do pass from this service into our services there is not the same continuity of care that occurs with a transition between services within our own Trust.

I am pleased to be able to tell you that at the beginning of this month we crystallised our referral criteria for Adult Services. From now on our Adult Directorate will provide mental health services for people aged 18-65.

This will mean that any individual under 18 referred to our Trust will instead be redirected to the more specialist and age appropriate Child and Adolescent Services provided by NHS Leeds.

I appreciate that this does not re-write your daughter’s story, but I hope it is an important step towards ensuring that people at this often difficult and vulnerable stage in their lives receive age-appropriate mental health services.

As both your story and Hannah's extremely helpful reply indicate, there is a strong argument for more integrated and consistent mental health support, especially at an age where, as in your daughter's case, school, college and university can all be affected. I sincerely hope that her recovery is swift enough to allow her studies to continue without any further disruption.

NHS Leeds (who commission all mental health services across the city of Leeds) review all postings on this site. So even though I am extremely sorry your experiences have not been 100% positive, I am grateful that you chose to comment on mental health services in a way which will be viewed by commissioners, policy makers and budget holders. I am also delighted that posting here has allowed Young Minds to make contact with you.

Let me close by saying how much I appreciate the positive feedback you have given about some of our staff. As I have already said, I would greatly welcome the chance to speak to you further about the positive and negative aspects of you and your daughter's contact with our services over the last 12 months.

Our PALS service would be happy to facilitate this at your request, and they can be contacted on 0800 0525 790. Please convey my best wishes to your daughter and wish her every success in her recovery.

Dr Guy Brookes

Associate Medical Director - Adult Services