"Trying to access help for a worsening mental health problem"

About: Leeds and York Partnership NHS Foundation Trust / Adult mental health St James's University Hospital / Accident and emergency

(as the patient),

Not a good experience and one that has left me feeling there is no help out there. In June 2012 my GP made a referral to CMHT and it would take a max of 2 weeks for an appointment. It actually took them 15 weeks and lots of phone calls from me and my doctor. I have since found out that since the date of the referral, my case was lost, re-referred, send from CMHT to PCT, back from PCT to CMHT, then CMHT cancelled the case (I am told that this is procedure, if nothing has happened on a case for ten weeks). After much chasing up, my doctors re-referred me again and I received a letter in late Sept, advising of an appointment at 10 am on three days later at Millside Community Mental Health. Leeds. On that date, I arrived in time. The person I was due to see arrived at 10. 15 and told me they thought the appointment was later. They told me they were going to find a room and at 10.45 I finally had an appointment, although they told me that they had not read my notes.

My most major of my concerns is around my eating disorder; this person told me that they didn't know anything about eating disorders. They said that they didn't know how CMHT could help and that if I was Bipolar or Schizophrenic it would be "simply a case of changing your meds". They could offer me help if I needed "help with your shopping or something like that". Which I don't. They also told me that ACDS was for people with things like bipolar and schizophrenia (it wasn't something I wanted anyway). They told me that they would have a meeting and contact me after two weeks, with a decision as to whether they could help, and then gave me a number to call if things got worse.

I in fact rang in early Oct when my anxiety was very high. A few days later was the date that was two weeks after my appointment. When I didn't hear anything I rang a couple of times to speak to the person I had seen but they never seemed to be there, I heard nothing at all after this. I gave up, assuming they wouldn't be offering me help.

I have had continuing physical problems, including severe pain, as a result of my eating disorder and have been in hospital twice in early 2012 for this - in Jan and Feb. In early Dec 2012 my pain was again severe and when I went to see my GP she called an ambulance. Such was the pain that morphine had to be administered before I could actually move to the ambulance. I must point out that I have always been honest about this pain and the reasons for it, with medical staff. I don't really want to go into the details here, but is concerning my physical dependency on laxatives.

At hospital - I arrived at 3.30 pm, at midnight I was still on a trolley. This wasn't the staff's fault: there was a shortage of beds and it cannot be helped, however, bearing this in mind, I didn't actually get to go to sleep in a bed until 1 am. Shortly before I was moved to the ward (so in the middle of the night), a doctor who saw me said I was to have an enema and be sent home. The nurse insisted that neither of these should happen as I was in too much pain. At 3 am that same doctor came to the ward that I had been moved to and insisted that I was woken up to be given an enema. This was painful and produced no result (which I already had told him, as there was nothing in my lower intestines).

The next day I briefly saw a consultant in ward round. He patted my stomach and said, in these words, "There's poo in there, that's why it hurts". He ordered another enema (which, thankfully didn't happen).

One of his doctors that had been on the ward round later came to see me to ask me about my discharge medication. Incidentally, each time I have been in hospital I have gone without my psychiatric meds for at least 24hrs despite one of them having immediate and horrid withdrawal effects (venlafaxine). He asked me what laxatives I wanted to be prescribed and in what quantity. This upset me, as I have a laxative dependency and am in pain due to this. I became upset and started crying, as I don't want to be prescribed the things, I want some help I explained and I cried and I begged for help. Something I should not have to do in front of other patients. I even explained how I had tried to get help from CMHT and what had happened and I asked if they could please get me some MH support somehow. I wrote down what he said next, as they depressed me so much. He told me that I don't understand how difficult it is for one part of the NHS to speak to another part, and that even if he did contact the MH team I needed to understand that, whilst my mental health problems are obviously of great importance to me, they are not a priority for the mental health team: they have more important cases to deal with.

This made me feel awful. I started to question myself as to whether I had made a fuss over nothing, but saw that I could do little else having been in so much pain and that, I had tried to help myself. After some time, the doctor said he would in fact call the mental health team. He came back to me and told me that I did in fact have a CPN (the person I had an appointment with in September), and so the help I was after was in fact available to me.

I rang Millside and tried to speak to my CPN, but they were not there. They said I would get a call back from my CPN, which they did. I was asleep at the time, but got a message on my answer phone saying that they had been my CPN since the assessment but because I hadn't had any appointments with him, they had discharged me and that if I wanted help I would have to go through the assessment procedure again.

I have not contacted my CPN again. I don't actually want to speak to them again. To be honest I am too tired and exhausted to go through the assessment procedure again, and I don't want to be faced with all this again. I don't want to feel like I am a waste of time. I can prevent further hospital admissions if I continue to use the laxatives, although it has required me to increase the frequency of this as the pain is more and more frequent.

I am writing this not because I want my CPN to reverse the discharge from CMHT, or that I want anything for myself. I am getting to the point when I can't care. How is it possible for a person with MH problems to stoke up the motivation to help themselves, when someone who is paid to be bothered, doesn't help? I am writing this because I don't want anyone else to have to go through this. I would also like to suggest that "not knowing anything about eating disorders" is not an acceptable position for anyone within the MH team to take. If they are not trained on eating disorders, how can they help anyone like me?

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Response from Leeds and York Partnership NHS Foundation Trust

Dear Herre,

Reading your posting I am left feeling very concerned about your experience and the responses of our service. I can completely understand how this will have left you feeling that you do not want to seek help for your difficulties again, and why you have perhaps lost confidence in our health professionals.

However, I would not wish for you to think that your experience is usual and/or would be repeated in the future, nor that we are not interested in your experience and views.

I am Guy Brookes, Associate Medical Director in Leeds and York Partnership NHS Foundation Trust. The issues you raise are of such concern that I ask if you could make contact with me so that together we can address them specifically. Could I ask that you contact me through our Patient Advice and Liaison Service (PALS)? I sincerely hope you feel able to do this and have some confidence that it will help us ensure that your experience is not repeated.

PALS can be contacted by phone on 0800 0525 790 or by e-mail at pals.lypft@nhs.net. They will put you in touch with me, as I have overall responsibility for adult mental health services provided by the Trust.

Your early experience in trying to seek help sounds incredibly frustrating and the delay is clearly unacceptable. In Leeds, as in other cities, help and support for people with mental health problems is provided by several different organisations. This means that it is sometimes difficult for referrers (including GPs) to identify the most appropriate service for someone they see.

For this reason we have arranged to discuss directly with referrers (or liaise directly with other organisations when more appropriate) so that people do not feel that they are being “passed around”. It is very unfortunate that your experience was so different from this.

I do worry that your experience of the assessment has left you with so little confidence and optimism. It does happen sometimes that people make an error around appointment times. However, you should be able to expect that the professional is prepared and acknowledges and apologises for such errors.

As to your more specific issues, our community mental health teams provide help for people with varying and complex mental health problems in many different ways. This includes people with eating disorders and at times they can and will seek support from The Yorkshire Centre for Eating Disorders who provide specialist input when required.

I would not wish to pretend to understand your own difficulties in any detail, but there would have been various opportunities that could have been made available to you.

It is not really appropriate for me to comment on the care provided to you in the general hospital, as that is a different organisation to ours. However, we have a well established mental health team within that facility which can be called upon for advice when needed.

Given your difficult experience I am sorry that I am unable to comment further or in more detail here, but hope that you will feel able to take up the offer to contact me through PALS.

Finally, as it seems you are still having a difficult time could I urge you to please seek help if in the future if you feel you need it. As before, this can be done through your GP or the PALS team can help you do this if easier.

Once again, I am extremely sorry that your contact with our services was so disappointing but hope that your situation, and the support we offer to you, improves in the near future. Thank you for taking the time to share your difficult story so openly here on Patient Opinion.

Yours sincerely,

Guy Brookes

Associate Medical Director

Leeds and York Partnership NHS Foundation Trust

Response from Leeds Teaching Hospitals NHS Trust

Dear Herre,

Thank you for taking the time to give us this feedback. We have carefully read and considered your comments. We are sorry to hear about your experiences. We always strive to offer everyone a high quality experience and take it very seriously when we get it wrong. If you would like to discuss the issues in more depth, and confidentially, you can contact the Patient Advice and Liaison Service (PALS) on 0113 2067168 or email patient.relations@leedsth.nhs.uk. This is the PALS service at Leeds Teaching Hospitals. Your comments cover 2 organisations - Leeds and York Partnerships Trust also who have posted a separate reply to you.

However both organisations welcome any contact from you and will work together to support you in your care.

We hope you feel able to contact our PALS service.

With warm regards

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Update posted by Herre (the patient)

I would like to respond to the above firstly by thanking Guy Brookes, and Tobias from LTH for their quick and comprehensive responses. It is reassuring to feel that I am being listened to and that my issues are being dealt with. I was especially pleased that Guy Brookes came to chat to me face-to-face and treated my concerns in a professional, yet humane, manner (even having a tissue at hand when I started to get upset!).

The confidence I feel, from these interactions, is beyond my initial expectations and a refreshing change from my prior experience of trying to resolve my concerns. I had previously built up an unhealthy level of cynicism about the processes by which service users/patients can feedback to service providers, and viewed the upper echelons of the NHS as quite distinct and removed from those who use the services. I am glad to say that this is no longer my opinion.

One of the great things about Patient Opinion is that it provides the necessary route for voicing opinion but without having to make an official complaint. As someone who is proud that we have an NHS and likes to defend it, I am always hesitant to criticise. Patient Opinion is done in a way that doesn't feel like making an official complaint but still with an expectation of outcome.

Response from Gina Alexander, Director, Care Opinion Scotland, Care Opinion

picture of Gina Alexander

Hi Herre

We're so glad to see you feel something positive has come from sharing your story on Patient Opinion. Your latest reply supports the things we say about Patient Opinion being a refreshing alternative to a very often negative complaints process. However, it sounds so much better coming from you!

Thank you so much for taking the time to put how you feel into words. You've encouraged us no end!

Hope you feel encouraged too and more confident about the future.

All the best


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