Co-production and Personality Disorder Service Developments – NW Boroughs Healthcare NHS Foundation Trust – Winners #MHAwards19

Our pathway and training centre is the product of ten years of co-productive working between people with lived experience of personality disorder and those living with and caring for people whose needs are consistent with personality disorder. 

We are nominating a ‘collaboration’ of services that have the golden thread of co-production, collaboration and service delivery throughout. The aim of the application is to illustrate, with evidence, the benefits that co-production can have on the development and transformation of current care structures. Hopefully, highlighting that this method of service development is not just the right approach ethically but can also lead to demonstrable evidenced improvement in care.

Winners - #MHAwards19

Co-Production

  • From start: Yes
  • During process: Yes
  • In evaluation: Yes

Evaluation

  • Peer: Yes
  • Academic: No
  • PP Collaborative: Yes

Find out more

Please briefly describe your project, group, team or service, outlining what you do and why it makes a difference

We are proposing that our integrated borderline personality pathway and centre of expertise (training centre) is considered for the positive practice award in personality disorder. Our pathway and training centre is the product of ten years of co-productive working between people with lived experience of personality disorder and those living with and caring for people whose needs are consistent with personality disorder.

We are nominating a ‘collaboration’ of services that have the golden thread of co-production, collaboration and service delivery throughout. The aim of the application is to illustrate, with evidence, the benefits that co-production can have on the development and transformation of current care structures. Hopefully, highlighting that this method of service development is not just the right approach ethically but can also lead to demonstrable evidenced improvement in care.

The journey started from a single voice when a carer asked the Trust in 2007 why they provided no services for his son who was diagnosed with a personality disorder. This was the start of collaboration with people who receive and people who provide services working together to co-produce the services outlined below.

Following on from the initial conversation, commissioners worked with the Trust and in 2009, agreed to provide a small amount of funding (£200,000) to employ three people to deliver training and provide assessments in personality. The new staff began by linking in with experts in the national training programme in Nottingham (KUF who led the way on co-production in training) and recruited at team of experts by experience and experts by occupation. They were all trained together. This led to the developments below.

On top of this, Wigan commissioners funded the innovative Wigan Multi Agency Programme – this is an innovative and award winning programme that looks to support, train and enhance resilience in the wider system to care and support people with borderline personality disorder. As with all aspects of the services, co-production was central to the model.

The training centre was developed with the help of the Trust’s involvement scheme (programme for supporting and paying service users in involvement). The training centre has trained over 1000 members of staff (see our training brochure). The training centre also includes service user developed videos and an e-learning programme (for a sample of the highly acclaimed videos visit: https://youtu.be/ZzWT1_Jbxqk). An exciting outcome of this is that the service users have set up a private enterprise to develop videos for other organisations.

Our nationally recognised and innovative borderline personality disorder pathway followed. This is a co-produced and governed care pathway with people with borderline personality disorder. The pathway looked to transform the way that existing services worked. Using existing resources, the workforce were trained to offer evidence based assessment, care and treatment. Service users were asked and expected to be more active in the programmes of care and traditional risk adverse approaches were reduced. The collaboration with our service users enabled us to develop a more recovery focused care pathway and to take the brave step away from treating people with personality disorder as fragile. We moved away from holding/supporting to an approach of hope and recovery. Working in partnership service users and staff we reviewed practices. The purpose of the personality disorder pathway is to provide NICE adherent treatment/therapy for all people who present to a secondary care service and meet Cluster 8 (this is the Cluster commonly associated with borderline personality disorder). Note: the pathway is not diagnostically driven rather diagnostically informed (see attached care pathway document)

 

Services offered:

·      Assessment – staff are trained by service users and staff to deliver specialist assessment using semi-structured interview to diagnose personality disorder with the key function of the assessment being socialising service users to treatment approaches and exploring their treatment choice.

·      Socialisation – a 12 week programme helping people to get ready for therapy

·      Choice of therapy programmes – individual and group delivered by trained staff with a mixture of specialist and non-specialist staff.

·      A transitional discharge pathway

·      A carer training programme – the exciting aspect of this programme was that the carer who started the whole journey was employed as a highly specialised peer support worker to deliver a training package that he co-developed for other carers (this programme is highly acclaimed and has been published see later section)

 

Local and Trust wide governance system

Experts by Experience/Experts by Occupation partnership

Second opinion service
Link worker
Patient owned

data collection

Therapeutic safe discharge

Easy return

Carer training

programme

Follow different pathway
Pharmacy

psychiatric reviews

 

The co-production theme has continued with Greater Manchester having a service users co-leading their BPD strategy and developing an ambitious programme to be able to offer effective care and treatment for 3000 people in across Greater Manchester. The model of co-production being the cornerstone of the whole programme development and governance

What makes your service stand out from others? Please provide an example of this.

We feel that the inclusiveness of the care we offer is what makes it stand out. It’s been co-produced to ensure that everyone has access.

Co-production is the central theme to all the programmes developed. The message that we want heard is that working in partnership with people who use mental health services can lead to significant transformations and improvements in service delivery without the need for substantial investment – a collaboration focus to improve care can lead to significant transformation.

Key achievements:

We have improved access to evidence based treatment for people with borderline personality disorder. We are the first Trust in the country to train non-specialist mental health practitioners in an evidence based treatment for borderline personality disorder (structured clinical management).

Our pathways are coproduced, collaborative and co-governed by experts by experience and experts by occupations with 10 experts by experience and 15 experts by occupation.

All training programmes and our training centre is co-developed and co-delivered.

Our carer training programme is aimed at supporting carers of people with personality disorder. It was co-written and is co-delivered by a carer.

Our Wigan multi-agency service has provided training to over 3000 multi agency staff. The aim is to support them to understand and also effectively support people with personality disorder (see publication in Section 7).

The Greater Manchester Borderline Personality Disorder Strategy is another great example of co-production.

 

How do you ensure an effective, safe, compassionate and sustainable workforce?

Training centre (centre of expertise in personality disorder)

All training programmes and videos are co-developed and include:

–       E-learning internally accessible to all staff (clinical and non-clinical)

–       Extensive awareness training programme/workshops to support the understanding and implementation of the programme

–       Structured clinical management

–       Targeted assessment training

We have also recently worked with partner organisations to co-develop and deliver training across Greater Manchester for multiagency programmes (eg Greater Manchester Police) to raise awareness, understanding and resilience to ensure people with personality disorder are not stigmatised and fully supported.

We have developed a clear structured pathway with clear supervision processes.

The clinical pathway has local implementation teams and also a Trust wide governance board – both of these have experts by experience involved in overseeing care and treatment.

 

Who is in your team

Band/gradeNumberWhole-time equivalent
E.g. Consultant Clinical Psychologist8d10.4
Consultant Clinical Psychologist8c10.4
Clinical Psychologists8b22.6
Consultant Psychiatrist (governance board)Consultant10.1
SCM practitioners655
Link Workers555
Clinical Psychologists8a42.5
Highly Specialist Peer Support Worker411
Multi Agency Lead Wigan8a11
Experts by experiencePaid per session143

 

How do you work with the wider system?

Training

Our multiagency programme’s whole focus is liaising and training all multiagency services. To date over 3000 multiagency workers have received our co-produced and co-delivered training. The training involves a one-day awareness training, Personality Disorder in Mind, and an enhanced two-day training programme, Personality Disorder in Mind Level 2.

We have also developed and co-produced an e-learning programme that incorporated video’s written and acted in by our service users (https://youtu.be/ZzWT1_Jbxqk).

A total of 307 people have gone through our carer training programme to date.

All parts of the pathway have clear information leaflets to support users.

 

Roll out of pathway

Our personality disorder pathway is now being used as a gold standard for application across Greater Manchester mental health providers. To do this, clinical leads and operational managers have been routinely liaising with senior leaders from Greater Manchester Health and Social Care Partnership, provider leaders and patient advocates to share learning, apply and roll this service out across the Greater Manchester footprint – governance for this has been established and this co-design at a regional level is sought to continue at pace this year.

Do you use co-production approaches? 

Co-production has been central to our whole journey. We see everything we have produced as being a celebration of co-production. It started when John Chiocci (a carer who is now also the Trusts Highly Specialised Peer Support Worker Carer Consultant) asked our executive team what we do for people with personality disorder. Ever since, co-production has been central and has supported the establishment of training programmes, development and governance of our borderline personality disorder pathway and the development and delivery of services eg our carer training programme.

We are proud of the work we have done however, we acknowledge that we want to do more and are working with the Trust to get new peer support roles that involved expert by experience pathway facilitators and full time trainers.

 

Do you share your work with others? If so, please tell us how.

We share our experience and learning in a variety of ways.

 

Training

Our award-winning Centre of Expertise in Personality Disorder delivers high-quality training around personality disorder. It is aimed at health professionals and other people who come into contact with people with a personality disorder in their jobs. It includes a wide range of courses to educate, raise awareness and help staff deliver better care for people with a personality disorder. Find out more at:  www.nwbh.nhs.uk/training

 

Publications

We have published evaluation studies and research from the work we have done as part of the borderline personality disorder pathway in the following articles:

Chiocchi J, Lamph G, Slevin, P, Fisher-Smith, D and  Sampson, M (2019) ‘Can a carer (peer) led

psychoeducation programme improve mental health carers well-being, reduce burden and enrich empowerment: a service evaluation study’, The Journal of Mental Health Training, Education and Practice, https://doi.org/10.1108/ link

Davies, J., Sampson, M., Beesley, F., Smith, D. and Baldwin, V. (2014), ‘An evaluation of knowledge and understanding framework personality disorder awareness training: can a co-production model be effective in a local NHS mental health trust?’. Personality and Mental Health. Vol. 8 (2)161-168.

Lamph, G., Latham, C., Smith, D., Brown, A, Doyle, J. and Sampson, M (2014) ‘Evaluating the impact of a nationally recognised training programme that aims to raise the awareness and challenge attitudes of personality disorder in multi-agency partners’. The Journal of Mental Health Training, Education and Practice. 9, (2), 89-100.

Lamph, G, Sampson, M, Smith, D, Guyers, M and Williamson G (2018) ‘Can an interactive e-learning training package improve the understanding of personality disorder within mental health professionals?’

 

 

Presenting our work

We were invited to present to the Bradley Commission for Personality Disorder at the House of Lords and our work is published in the 2015 report.

We have been invited to present our findings at several key conferences including a number of times at the British and Irish Special Interest Group in Personality Disorder.

We have been invited to present at workshops on our pathway nationally and internationally in dozens of places in the UK and also Ireland and Sweden.

We have also been asked to share our pathway with National Institute for Health Research in a commissioned project looking at how to implement the 10-year plan for NHS England.

Many of our staff are currently involved in writing a book for Oxford University Press in how to implement structured clinical pathways for personality disorder.

 

What outcome measures are collected, how do you use them and how do they demonstrate improvement?

All our training is evaluated as per studies published in the previous section.

 

Carers programme

To date, 307 people have gone through the carers programme. The carer programme service evaluation has outcome data on 60 participants who completed the programme. Measures used include Warwick and Edinburgh Mental Welling, Assessment of Carer Burden and Family Empowerment Scale.

 

Patients/service users 

For the borderline personality disorder, we use the patient owned database (POD). This is an electronic recording system that allows service users to complete measures at home on their tablets/phones.

Over the past 12 months, 341 service users have been referred to the personality disorder pathway (assessment). 84 are currently in treatment programmes and others are in the socialisation stage of the pathway or have not engaged in treatment or therapy.

 

Measures used for the pathway include weekly measures for:

·      PHQ-9 (measure of depression and anxiety)

·      Social functioning questionnaire (social activity)

·      Warwick and Edinburgh Mental Wellbeing (mental wellbeing)

Previous analysis of people in our programme demonstrated a 30% clinical improvement in PHQ-9 and mental wellbeing.

 

 

Has your service been evaluated (by peer or academic review)?

 We are collating clinical outcome data for people who are in active treatment on the borderline personality disorder pathway as described in previous sections. Reports at present are based on the number of people who are currently in treatment pathway.

We are also conducting an audit on the assessment process. We will be looking at services users’ experience of the assessment process using a measure of stigma, hope and recovery.

Different elements of the pathway have been evaluated as per the publications shared in response to a previous question.

 

 

 

How will you ensure that your service continues to deliver good mental health care?

The current services are seen as part of the Trusts usual care. The pathway has local implementation teams (on which operational managers, clinical leads and service users sit). There is also a Trust wide personality disorder governance board that oversees the Trust wide implementation of the programme. The governance board has 30% representation from experts by experience (a minimum of six – two carers and four people with lived experience of the being in services with diagnosis of borderline personality disorder).

We are currently working with commissioners to explore an assertive outreach model in an attempt to minimise the need for out of area referrals to rehabilitation programmes as the care approach is to have a community programme and placed based care.

 

What aspects of your service would you share with people who want to learn from you?

We have encountered a number of challenges. We’ve outlined some of the myths/challenge and solutions/learning in the table below:

 

Myth/ challengeSolution/learning
Service users with borderline personality disorder cannot engage in active treatment programmes, for example group treatments.Service users respond well when they have a thorough assessment including extended conversations about treatments programmes. Many want to get better and are willing to be more active in their treatment than practitioners can assume. Also, having a timed (set time) goal focused programme that focuses on helping people get ready for treatment is really effective (socialisation phase).
You need to be a specialist psychotherapist or psychologist to work effectively with personality disorder.

 

With training and also the support of a clear structured pathway, we have found non- specialist mental health practitioners are able to effectively deliver care for people with borderline personality disorder. It is more about the person’s attributes rather than profession or training.
You should not include service users in developing programmes as they won’t be able to cope with the uncertainty.

 

From our experience this is not the case – having people with lived experience at the start of a programme leads to a more robust clinically appropriate high quality care pathway. Interestingly, many times they have saved money when they challenge professionals for treating people as too fragile. It also leads to better relationships between service users and the organisation (increased trust) which is essential for good outcome.
Mental health providers shouldn’t provide interventions for carers.

 

Feedback from our carer programme is overwhelming positive. Not only does it provide significant benefit for the carer in both wellbeing and burden but also empowerment. The programmes improve relationships between the service user and carer and consequently reduce burden on services.
Having specially trained practitioners delivering a pathway can lead to significant improvements in the quality and consistency of care delivered. However, it can lead to the wider system feeling deskilledTo counteract this, whole system training in the care and management of personality is needed to ensure the whole system remains skilled and work effectively with this client group.

 

 

How many people do you see?

There have been 341 referrals to the pathway in the last 12 months. Currently approximately, 80 people are in active treatment programmes at any one time. Referral can be GP, professional or self-referral to our Assessment Teams. The Assessment Teams will triage the referral, develop a safety plan and then, if appropriate, refer to the pathway for specialist assessment.

Carer training programme has been offered for 307 people with 67 waiting for the next programme (referral can be via self-referral or via mental health practitioner)

 

How do people access the service?

 

Borderline personality pathway

Referral can be GP, professional or self-referral to our Assessment Teams. The Assessment Teams will triage the referral, develop a safety plan and then if appropriate referral to the pathway for the specialist assessment.

 

Carer programme

Referral can be via self-referral or via mental health practitioner.

 

Wigan multi-agency training programme

This can be access via self-referral to any of the training programmes.

 

How long do people wait to start receiving care?

It’s difficult to give an accurate number due to the diverse array of programmes. This can vary from no wait to 12 months depending on the programme. Some programmes only run annually eg mentalization based treatment.

 

How do you ensure you provide timely access?

All referrals are triaged. We recommend that all people waiting for our treatment programme (borderline pathway) have safety plans.

A weakness of our pathway is that there is a lack of resilience in the system to cover for maternity leave, staff sickness etc. Although we can up-skill staff, there is currently a lack of resilience in the whole system to enable us to do this. However, there are steps to improve and share recruitment collaboratively across the Greater Manchester footprint so in the future we hope to limit the system resilience issue through collaboration and lessons learnt with other providers, commissioners and the Greater Manchester Health and Social Care Partnership.

 

What inequalities have you identified regarding access to, and receipt and experience of, mental health care?

More work needs to be done to ensure that the pathway is appropriate for older people, people with learning disabilities including autism and people from black, Asian and minority ethnic groups. We are also very aware that the pathway tends to focus on people who seek out services. More engagement is required for harder to reach groups. A particular area that we are looking at is middle age single men due to high suicide rate.

 

What is your service doing to address and advance equality?

By working in a co-produced way and consistently listening to and engaging with our communities, we are looking to reduce stigma and increase awareness of our services.

In Wigan, we have used a weekly health column in the local newspapers to share information about personality disorder. We have also used the column to share advice for people caring for someone with a mental health condition and signposting to our carer programme.

 

How do you identify the needs of a person using the service (such as their physical, psychological and social needs)?

Measures used for the pathway include weekly measures for:

·      PHQ-9 (measure of depression and anxiety)

·      Social Functioning Questionnaire (social activity)

·      Warwick and Edinburgh Mental Wellbeing (mental wellbeing)

 

The assessment involves several key components of which the diagnosis is only one. Other key functions are to:

·      validate the service user’s experiences

·      help look at their strengths and goals as well as their needs

·      help them understand what a personality disorder is and the limitations of the diagnosis.

Whenever possible, the assessment process will look to link the family into services. The role of family, friends, and partners is seen as an important part of the care and treatment making up the triangle of care.

In the pathway, we offer carers the option of joining our carer programme (see later section for more information on this). The assessment will also cover crisis contingency care.

The final part of the assessment process involves socialisation. The aim here is to promote understanding of the treatments offered, including what is expected of the service user what they can expect from services. At the end of the assessment process, sometimes service users may not feel ready to engage in the active treatment part of the pathway. In these cases, the service user is referred to the socialisation phase.

 

How do you meet the needs of people using the service and how could you improve on this?

The pathway is designed to give people the best opportunity of overcoming their problems, building on their strengths and learning to live their life as well as possible. The underlying principles of our pathway are drawn directly from the best available evidence. We have drawn on the guidance from NICE guidelines 77 and 78 (Antisocial and Borderline 2009), the Personality Disorder Consensus Document (2017) and Safer Care for Personality Disorder (2018). It has been developed with and for people with borderline personality disorder as well as experts by occupation.

 

Within our pathway we talk honestly and openly about diagnosis. We believe in being transparent about why somebody might meet the criteria for a diagnosis of personality disorder. When we talk about diagnosis we also think it is important to dismantle it, highlight the problems of the label and to work with the service user to help them understand the impact of their life experiences on the ways they cope. We also work with them to help them see that they can change and go on to potentially leave the diagnosis behind. We also feel that it is important that our pathway is not diagnostically driven. The help offered in our pathway should not be determined by whether somebody has a diagnosis or not, but by whether their needs can be met by the treatment programmes offered in the pathway.

We believe having a pathway that has a clear structure and clear clinical approaches, delivered by specially trained practitioners, will enhance consistency and reliability. This way, everybody knows where they stand. Our pathway also emphasises the importance of a relationship in recovery. Thus, a core part of our care pathway is about developing a reliable, trusting, therapeutic relationship between the service user and their pathway worker.

 

Our treatment offers are Structured Clinical Management, Mentalization Based Treatment and Dialectical Behaviour Therapy.

Every practitioner working on the pathway has additional training in a specialist approach for working with borderline personality disorder. There are clear supervision and governance structures in place to ensure consistent care and effective communication within the boroughs and across the Trust. All practitioners delivering care on the pathway receive are expected to attend fortnightly clinical supervision. Each borough has a personality disorder lead and this person provides monthly reviews of their care pathway to a Trust-wide board. There is an implementation board in each borough that oversees local delivery. These boards have representation from all stakeholders including experts by experience, practitioners and management.

Whilst our pathway has high expectations for our service users, it also acknowledges that for many people change and recovery can be difficult. The care pathway provides treatment in-line with NICE recommendations in that the treatments involve service users being active, with most involving some form of group aspect. Some people at the beginning of the pathway really struggle with the active participation required, as well as with the social component (group work) of our programmes. The pathway acknowledges this by providing an extended socialisation period that is designed to give people time to get ready for the treatment aspect of the programme and addresses barriers to group work, attending clinics etc.

For people who are not able to engage in the programme, the pathway provides safe discharge guidance and an open re-referrals approach acknowledging that timing for recovery is also an important component.

An extra safety mechanism is found within the role of the Personality Disorder Link Worker. This person can provide extended input and liaison with service users and other agencies for people who are not in a place to actively participate in our treatment programmes.

The borderline personality disorder pathway is a journey and we would like to continue to develop with:

–       More work to help reintegration

–       Early intervention programmes

–       Further work to the wider system

–       Further work to upskill, provide training and support for schools, probation, housing, police, GPs etc. We have already developed e-learning programmes that we believe can facilitate some of this.

 

What support do you offer families and carers? (where family/carers are not the service users)

The pathway acknowledges the needs of carers of people who meet the diagnostic criterion of borderline personality disorder. The programme is a carers-focused programme. It is co-delivered by a carer and a practitioner. The programme aims to educate carers about what a personality disorder is, how services work and treatments available. The programme also offers a second phase of skills training which helps carers to develop skills that will support them to support the person in their care more effectively. The programme is delivered in a group format. It involves education and peer support.

 

 

Commissioner and providers

Commissioned by  Integrated pathway commissioned by local CC

 

Provided by: North West Boroughs Healthcare NHS Foundation Trust

 

Size of population and localities covered is approximately 3.5 million across Greater Manchester, mid Mersey and Wigan.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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