"Nottinghamshire Personality Disorder & Development Network long waiting list"

About: Forensic mental health / Community forensic services Forensic mental health / Low secure services Nottinghamshire Healthcare NHS Foundation Trust / Adult Mental Health Services - Community (City)

(as the patient),

The nurse I have seen at the Nottinghamshire Personality Disorder & Development Network was very understanding.

It was over six months since I went onto the waiting list and was told to contact them if I had not heard from them within six months.

I have been waiting a long time to access this service and still am waiting, with no date of beginning the 12 week MBTI training course, then the one year MBT therapy. The only helpful thing I was told at a 'catch up, and check in' appointment was I haven't been forgotten, but there were dozens ahead of me and another 'catch up, and check in' appointment would be made for three months time and if I needed emergency help, I was told the crisis team were available and/or the Samaritans. Thank you for that.

I was told at an outside event, where Nottinghamshire Healthcare NHS Foundation Trust had stalls, in the Old Market Square, Nottingham, last week, was that the mental health services were the 'Cinderella' service of the NHS. Why is this the case? The mental health services should be on a parity with the physical health services.

More resources should be given to these essential therapies.

Please invest more money, and train more skilled people, so the waiting lists are cut to manageable and more humane levels.

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Responses

Response from Louisa Hagan, Nottinghamshire Healthcare NHS Foundation Trust We have made a change

Thank you very much for taking the time to give your feedback, we try hard to listen to the feedback from our service users and make changes where resources allow.

Whilst it is good to hear that you experienced aspects of our service as understanding and helpful, the issue of the waiting lists to access our group therapies remains an on-going frustration for us and our service users. We are aware of this and as a result we introduced the 3 monthly follow up appointments to maintain contact with our service users and to help to support continued engagement with our service which has widely been viewed as a helpful/positive step.

We are aware we have long waiting lists for the MBTi group and we apologise for this. Our service is in huge demand and we are working hard to manage the number of people referred into and accessing our service and have so far reduced the wait from referral to assessment significantly, this unfortunately has a knock on effect to the group waiting lists. We are constantly working to explore and plan alternative approaches to our waiting lists within the resources we have. Due to the fact that MBTi is an introductory group which is a starting point for moving into the yearlong therapy group, we are only able to plan MBTi groups in line with up-coming spaces in the therapy group (in order to avoid any further wait after completing MBTi and reducing the risk of moving from one waiting list to another). However, we are currently in the process of introducing a rolling system which will, in time, give us a more clear idea of when people will be offered the group at the point of being placed on the waiting list. This will hopefully be more helpful than the current difficulty of not knowing.

Thank you also for your comments regarding the overall mental health provision and the need to increase resources, I am sure these views are echoed by many within the mental health services. Our Trust works hard to bring mental health issues to the forefront of our communities in order to maintain the focus on the demand and delivery of services within mental health services and your feedback will be shared with our service managers and to the commissioners, who our service regularly reports to.

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Update posted by HopeFeedback (the patient)

Thank you for your reply Louisa and for the points you made about improving access for people in distress to the MBTi training group and then the year long MBT therapy group.

My wait from referral to assessment was eight months and then it was another six months before the 'catch-up & check-in' appointment this July (which I had to make myself), a total of fifteen months. I was referred after a 'distress tollerance' course with an excellent specialist nurse in April 2015.

Do you have an idea when the process of change of bringing in a 'rolling system' you mentioned that is currently being brought in will give me an idea of beginning the MBTi training, as I do not know when this might occur? I only know for sure when my next 'catch-up & check-in' appointment will be, in another three months time time. I would be grateful for a rough idea of the date of commencing the MBTi training course, following the change in improving the service you referred to.

The three month hour long 'catch-up & check-in' (follow up appointments) are a positive step, but can not replace the beginning of training & therapy, but I am grateful for them.

I'm sure you understand how distressing it is to be kept waiting, as my emotional & cognitive mental health is not good and feels very painful to live with and I hope the sooner I can make a start the better.

I understand the Trust is in a difficult position with regard to funding limitations and I suppose this is in large part due to their reliance upon funding from the Government, who have said over the years that they intend to give more to the mental health services. Is this funding based upon outcomes of different treatments?

As an interest, how 'helpful' is the MBT treatment and are there follow-up studies to ascertain how patients are doing in the long-term?

Response from Louisa Hagan, Nottinghamshire Healthcare NHS Foundation Trust

Thanks again for your comments.

In terms of information regarding mentalization based treatment and it's effectivenes in treatment for personality disorder, it may be helpful for you to visit the work undertaken by UCL who have been instrumental in implementing and researching this treament. One link you could access is: https://www.ucl.ac.uk/impact/case-study-repository/mentalization-based-therapy.

We are implementing the rolling groups in the Autumn at which point a better idea of timescasles will be known. Our service is under constant review and will develop a strategy in line with the considerations of an external review that is currently underway in regards to the pathway for people with Personality Disorder needs within the Trust, this report will be available in the Autumn and will help us futher plan and adapt our services.

In terms of your specific situaiton and timescales it may be more helpful for you to make conatct with the Network for a further update.

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Update posted by HopeFeedback (the patient)

Thank you Louisa for the information about the research by Peter Fonagy and others.

I quote from the page you linked to and I quote for educational purposes:

'...Rigorous scrutiny of the use of MBT has demonstrated that this now frequently used treatment reduces hospitalisation, suicide and self-harm by 55% compared with control groups, with long-lasting benefits including reductions in depressive symptoms and suicidal and self-mutilatory acts. There is also evidence to suggest that MBT achieves changes in social functioning, increasing the chance of meaningful employment and full-time education, and reducing reliance on health and social services. What is more, MBT delivers these very substantial benefits in a more cost-effective manner than alternative methods of treatment....'

It sounds that it is a good therapy. The only problem I came across was that some research was only accessible if you logged in with a password.

I had a conversation with a member of the Network previously but was told they could not give me a date for starting the training course.

Perhaps it will become clearer in the Autumn.

I will keep you updated on what happens then.

But, thank you for letting me know that changes will happen in the autumn.

Update posted by HopeFeedback (the patient)

UPDATE:

The 12 week MBTi (Mentalization-Based Treatment Introduction) course is very good and the facilitators (3 facilitators and 1 student) use the skills they teach themselves, which shows that they believe in using it to help in their thinking and feeling.

Each week involved looking at how our mentalization works, from different angles; and there was a sort of 'check-in' at the start of each session to see how people had got on with the 'task' (homework) set the previous week. Attachment was a major topic during the course and this is encouraged. After the 'check-in' that week's topic began, involving group participation and information given on a flip-chart. At the end of the session an helpful handout was provided, summoning up what we had been talking about that week.

The facilitators could not give a start date for people at the end of the 12 week MBTi training, for the full 12 month weekly group treatment, with individual one-to-one time every month. However, in the final meeting with my MBTi trainer I was told September 2017 may be a possible start date.

The course is not for everyone, as out of the 10-15 that started, about 7-8 were there at the end, but if you have issues about the group, you can talk about it with your individual facilitator. I use 'facilitator' because it's not therapy.

Also, your facilitator in the 12 month treatment will not be the one in the MBTi group. Which was not the same one that sees you before the 12 week MBTi training. I don't know if this is deliberate, but it does help to understand attachment and separation anxiety. Part of the training covers this in the seven basic emotions.

All the best to everyone in the MBTi group and the staff.

Update posted by HopeFeedback (the patient)

Notts Personality Disorder & Development Network - Long Waiting Lists

It's a long wait between the 12 week MBTi (Mentalization-Based Treatment Introduction) training course and the 12 month MBT treatment (Mentalization-Based Treatment). Several months and still waiting.

It's easy to forget what I was taught in those 12 weeks, therefore the training is lost with time.

Mental health is still a poorly funded service, despite political soundbites about putting more money into it, and suicide rates are increasing due, in part, to a lack of quicker interventions and appropriate treatments.

I don't think the quote made at the top of this page, under 'CHANGE MADE' is accurate. IT HAS NOT CHANGED.I think it is wrong to say changes were/would be made last Autumn (2016). It is now Autumn 2017 and I still do not know when the 12 month MBT (Mentalization-Based Treatment) treatment will begin. I was told in a letter it would be in 'due course'. That could mean anything.

How much longer will Nottinghamshire Healthcare NHS Foundation Trust allow such long waiting times? They used to say that when they became a Foundation Trust things would get better, because they would be able to control their budgets and planning would be better. I think they have become too big and have forgotten about the people they are working for - the patient/service user/client. They may have the 'Positive' newsletters but it just doesn't wash with me. I am all for positive news, but please be honest about waiting times.

Thank God for 'Care Opinion' which, at least allows the patient to have a say and not to be ignored by the Trust's marketing publications. And if the 'Care Opinion' succumbs to political pressure, the internet has many other avenues of expressing both positive and negative experiences.

I am grateful for the NHS and hope the people with the 'power' to change things for the better will do so.

Response from Louisa Hagan, Nottinghamshire Healthcare NHS Foundation Trust

Thank you for posting your comments, it is really helps in understanding the issues faced by our service users.

We are aware of the wait for accessing treatment within our services and we are working with local mental health services and commissioners to address this in an ever changing financial climate.

We try to aim to minimise the wait from MBTi into MBT Therapy for the reasons you highlight above (helping to hold the MBTi information in mind to support the best use of MBT Therapy) unfortunately we have to manage this within the resources we have available to us which can directly impact on our delivery of treatment. We have also found that Mentalization Based Treatment has a high retention rate and is a treatment with real relevance to our service users meaning that many will go onto accessing the year-long treatment, this then has a knock on effect to our treatment numbers and subsequent waiting times.

We would be happy to speak with you about this and look into your specific wait in more detail. Please contact me (Louisa Hagan – Operational Team Leader) or Clare Lloyd (Clinical Team Leader) on 0115 8760162.

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