Are you involved in your own care?

According to a number of sources, including NICE and Department of Health, people should be involved in planning their care; care plans should be developed jointly and people should be given a copy of their care plan. The care plan should be reviewed at an appropriate time (but no less than annually). The care coordinator or lead professional writes up the agreed care plan (the individual can write it if they want to) and this sits on the electronic patient record called PARIS in Leeds and York Partnership Foundation Trust. The clinician then prints this out to share with the service user for accuracy and then shares with the agreed people, including the service user as a final record.

Should we develop the care plan with the individual? Short answer is yes. Involving the person adds to the sense of empowerment and self determination; is respectful; increases the likelihood of engagement with the plan and therefore improves health outcomes; contributes to the therapeutic relationship and works towards the person’s recovery and wellbeing on their terms. #whywedontengage emerged via Twitter recently; click here to read what people using services said about why they don’t engage – it’s (brutally) honest and not censored by services.

So who does the care plan actually belong to? My answer would be that it belongs to the individual concerned yet responses from the National Service User Survey and local audits suggest that people are not always being given a copy of their care plan and therefore the owner of the care plan becomes PARIS.

If the care coordinator or lead professional has worked collaboratively with the individual to negotiate and agree the plan of care – the goals, who is going to do what and when, then does it matter if the person has a copy of this written down in a care plan or not? As a pedant, I would say that yes, it matters – why go to the trouble of working closely with someone to then not bother capturing it in a personalised care plan. Professionally, clinical staff have to write a care plan anyway so it may as well be done in a way to reflect the involvement that the individual had in agreeing the plan. I would also add that the care plan should be presented in the format that the person prefers, taking into account their communication requirements. You might consider different font size, paper colour, audio tape, language, Braille etc – all depending upon the need of the person. Click here for information leaflets and more about Care Programme Approach.

I have had my say about the questions posed but what is your view? Post on the blog or email lypftplanningcare@nhs.net

Planning Care Checklist

Join the conversation here.

Access to peer support ………. inadvertent gatekeeping?

“Have you been given information by NHS mental health services about getting support from people who have experience of the same mental health needs as you?”

This is one of the NEW questions in this years National NHS  Community Mental Health Service User Survey. The focus is about people having been given information about getting what is termed ‘peer support’ – support from people who have lived experience of mental health issues.  There is lots of information about peer support to be found on-line, for example – Together for Mental Wellbeing, Mental Health Foundation and Centre for Mental Health.  And there is information about where you can access peer support locally, for example in York, or in Leeds.

This information being available to people in a number of ways is better – having a discussion about it, accessible leaflets etc. Better still is people routinely being supported by peer support workers. This is where the conversation moves away from vanilla:

• Access to peer support workers in mental health teams. Fab, but how do we ensure this is equitable, how does everyone get the chance of this?  A referral system within a team can be helpful but can highlight some interesting things.  Speaking with a peer support worker it became apparent that the same care coordinators refer for peer support work and the same ones don’t. There could be a number of explanations for this, and I am sure it couldn’t be that some care coordinators don’t value peer support work or working in a recovery/wellbeing orientated way, that they are not choosing whats best for someone rather than offering choice and are not inadvertently gatekeeping and creating power differentials. So we must look to alternative explanations.
• Could it be said that most people have some lived experience of mental health issues, through their own life experiences or through that of their family and friends? If so, then people are routinely being supported by peer support workers. Mission accomplished, box ticked. But this is not quite right, this is hitting the target but missing the point. It diminishes the experiences of people with mental health issues.
• Should recruitment to all posts actively encourage people with lived experience? Perhaps this is already happening but what about choice?  Should people have to disclose their lived experience, and if they don’t will they be discriminated against in selection?
• Peer support on Social Media? – whatever next! An alien concept to some, but there is ever-growing peer support on social media channels.  People regularly blog, Tweet and Facebook about what’s going on for them and its reciprocal. The support offered is pretty immense.  It bypasses the ‘referral’ stage and is instant. A beginner’s guide to Twitter should help if you are working up to Tweeting.
• The influence of National Survey’s in changing practice.  The benefits of using approaches that support recovery and wellbeing are well established and backed by research.  The National Survey results will tell us what people accessing services are experiencing, are folk being given information about accessing peer support – or not. The question creates a standard and measure.  The danger is of it providing a minimum standard, I would not want to see the current provision of  ‘in-house’ peer support reduced based on a standard of providing information only.

People currently accessing mental health services are future peer support workers, the eco-system of peer support. Often people want to share what they  have learned along the way, want to give something back, want to achieve their ambitions and goals. People  understand that they have a unique view of living with mental health issues, that they are ‘experts by experience’  rather than an  ‘expert by education’. Perhaps a blend of both is often where we find ourselves at?

 

 

Planning Care in Assertive Outreach

I was fortunate enough to spend some time with Leeds Assertive Outreach Team (AOT) this week.  Assertive Outreach teams have been around for some time and are intended to support people with severe mental health difficulties who find it difficult to work with traditional services. You can read more about AOT’s in this Rethink information leaflet.

I initially met with AOT late last year to hear about how they were using Care Programme Approach (CPA) to co-ordinate, plan and review care. There were 3 questions considered:

1. How does CPA works within Assertive Outreach?

Around care plans it was identified that most people did not want a copy of their care plan; that reviews held varied interest to the service user – from ‘something to be endured’ to ‘very keen’.  In response to this the coordinators use a number of flexible methods to complete the review.  Where the person is in hospital the coordinators take the opportunity to spend time with the person developing the care plan for when they are discharged; it was acknowledged that the in-patient CPA review was not always conducive to agreeing goals and detailed plans following discharge. There was some variation in the way the CPA documentation was completed.

2. Why does CPA works within Assertive Outreach?

The team reflected that their ability to be flexible contributed to CPA working well within the team, factors impacting this were their level of experience, good understanding of care management/planning and proactive engagement with people using the service and partner agencies.  Capacity was also identified as a factor, that coordinators have around 12 people on their caseload.

3. What could be better?

• Inpatient reviews being held more flexibly
• Summary – a one page summary would be useful alongside the full care plan; it would also capture initial plans.
• Documentation – The running order of the CPA Care Plan could be improved; the language could be simpler; the review questions should be revised.

The full report is available here.

Having met with AOT again this week, it is apparent that they continue to use CPA well to provide co-ordination, care planning and reviews.  The coordinators find a way to involve the person in planning their care despite on the face of it the person not necessarily wanting to be involved.  The involvement comes through negotiation, flexibility, working with the persons priorities first and through getting to know the person, and their carer(s)/networks/supporters well.

Of the CPA documentation, there are changes planned following a review of what we have and feedback from service users, carers and clinicians.  You can read about the changes in full here; but the headlines are:

• CPA Care Plan name changing to My Wellbeing & Recovery Plan
• Change in wording used for the care plan headings – to be straightforward, plain English
• Goal setting and care planning section made simpler
• Additionally,  a ‘one page care plan’ to be included within the Integrated Care Pathway trial

How does CPA work in your team?

What would make CPA better?

If you access services or are a carer: What is your experience of  being involved in developing your care plan and in your review?

If you have recently had a review, then you should receive a brief questionnaire through the post, alternatively, you can complete this online here.

 

 

 

 

 

Information for people accessing services and carers about CPA

Care Programme Approach (CPA) is the term used to describe the way that a person’s care, support and treatment is arranged when they have a range of needs.  This is done through assessment, coordination, care planning and review.  Some people will have straightforward needs; their care, support and treatment are described as ‘Standard Care Plan’.  You can read our policy: The Trust Wide Care Programme Approach Policy (including arrangements for Standard Care Plan) here.

Information for people accessing services and carers about CPA

The single most important thing about CPA is that you should be at the centre; it’s about you; it’s about what you want to do with your life; about what you want to achieve and how you want to achieve it. This may involve support, care and treatment from others – people that support you, carers, your friends, family, it may also include mental health services, health services, social care, and other organisations near where you live. Some people also get support from others going through similar difficulties – this is often called ‘Peer Support’. You can access peer support in a number of ways, for example, Mind, local groups or online support.

 

There are four stages to CPA:-

1. Assessment
You will be asked questions about aspects of your life and past, for example: personal; health; social;  about your safety (this is sometimes called risk); about what you enjoy doing; about what you do to help manage; about anyone else all ready involved in your care and support, including any carer. Carers can have their own assessment.

 2. Care Coordination

A care coordinator will be named to work closely with you and your carer to arrange care and support and to work with you to agree goals.
3. Care Plan
This describes your health and social care goals.  The care plan says which services will help with recovery and wellbeing; and what you do to help too.

The care plan is about you. It is developed with you and includes your goals; what support is being offered; who is giving the support and when the support will be reviewed.  The carer will be included too if you want this.

You may write the care plan yourself, or write it with your co-ordinator, either way, you should have a copy of your care plan.

4. Review
These are sometimes called CPA meetings; they happen at least every 12 months but can be more often. This is where the care plan is reviewed.  This is done by discussing with you, your carer (with agreement) and any others involved in your care plan about what is working well and what may need to be changed to support your recovery and wellbeing. The review is usually held in a way that you prefer – for example, some people prefer more of a relaxed discussion with their co-ordinator, others prefer a full meeting with everyone involved present.

Have you recently had a review? If so, let us know how this was for you by completing a brief survey (12 questions) – click here for more information and the survey. Results tell us what we are doing well and where we need to improve.

Standard Care Plan

If you have straightforward needs and are seen by one mental health worker then your care, support and treatment is described as ‘Standard Care Plan’.

You can expect:

• A lead professional identified – this will be the person that you see
• A letter – this is the care plan
• Review – this is a chance to talk about how things are going and any further care plan agreed.

More written information

Click here for an information leaflet about CPA

Click here to read an information booklet on CPA – for people in Leeds

Click here to read an information booklet on CPA – for people in York and North York

These booklets are also available in Urdu, Farsi, Czech and Polish – contact donna.kemp@nhs.net for these.

Want to get involved and keep up to date about what’s going on?

The LYPFT Planning Care Network is a digital space for people who access services, carers/supporters, staff and partner agencies to share their ideas and experiences around care coordination and care planning.  Click here to visit the network; you are most welcome to post comments and to share your views and experience. If you want to write your own blog post, then contact donna.kemp@nhs.net to discuss.

You can also join the Service User Network – they meet monthly in a range of venues across Leeds; click here for more information.

 

If you require any further information regarding CPA or Standard Care Plan then please contact donna.kemp@nhs.net

LYPFT Trust Wide Care Programme Approach Policy

The Trust Wide Care Programme Approach Policy (including arrangements for Standard Care Plan) has now been published at Leeds and York Partnership NHS Foundation Trust following a review of the outgoing CPA Policy; it identifies best practice as outlined by the Department of Health, Nice Guidance and the various frameworks supporting practice. There was consultation across Leeds and York – clinical groups, service user and carer groups, social care and partner agencies.

Of note, the following are included within the policy:

• The term ‘Standard Care Plan’ will be used to describe the arrangements for people not on CPA (this replaces the term ‘care plan’)
• Involving people in developing their Care Plan and writing the care plan in a way to reflect this
• The person (and their carer if agreed) should be provided with a copy of their Care Plan
• Agreeing with the individual the best way to arrange their ‘Review’ – CPA or Standard Care Plan
• Guidelines for Section 117 Aftercare including template for discharge or transfer – these have been agreed across the local authorities in Leeds, York and North Yorkshire

You can find a copy of The Trust Wide Care Programme Approach Policy (including arrangements for Standard Care Plan)  here.

The policy will be reviewed again in 2016, work on that will start in the next 9 -12 months. In the meantime, please feel free to leave your comments or feedback, they will be considered in the review. Nearer the time, I will be asking for people to express interest in getting involved with the review……..

Donna Kemp | CPA Development Manager | donna.kemp@nhs.net

 

 

 

Pathways to Recovery: Service User & Carer led research, a carers view

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Service User Led Research ‘Is there a pathway to recovery through care coordination?’ was presented at a recent CPAA event  – click here to read more about this event. This emancipatory research was designed and conducted by people with lived experience of mental health difficulties and carers.

This research supports recovery in a number of ways – for example, personal recovery and wellbeing; hope, inspiration and aspiration for others; contributing to the evidence base for recovery. This is a positive story that should be shared…… Caroline Kemp (no relation 🙂 ) agreed to write about her experience as a carer & researcher; and shares a poem about coding…….

Pathways to Recovery..how and why I got involved..

The last few years have been very rewarding for me…the path has been very stimulating and has been a big learning curve.

My background has been in mental health as I have cared for my daughter for over 16 years. She has enduring and severe mental health problems..her path has been very tough and witnessing this battle is also equally as tough..too much anxiety and panic. .and also the fact that no meds seemed to be of any help..just lots of dreadful side effects…as a mum and a Carer you expect or try to fix things..I always thought things would be better if only we could find the right meds…I tried to read as much as I could so I could help..I thought in the early days I would fix it..and my daughter would not suffer needlessly for years…

When I first heard of the research into pathways to recovery through care coordination I felt strongly I wanted to be a part in it..( I had had plenty of experience of Care Coordination..not all positive ) The reasons were mixed..on one hand they were purely selfish..if there was any hope of finding recovery I had to know it.. I wanted to have some hope…the other reason was to make things better for everyone in anguish and torment..I think this is also why people do research in the first place..to make things better.. I had seen too many people abandoned on the acute wards without a single visitor.  Also our research group were chosen because of their expertise and life experience..there was no formal academic requirement..another strength was we were a mix of service users, Carers and professionals.  We had multiple perspectives and this made out research even better science. Also I knew from the way this research was done we would play a full part in doing it..at all levels ..it would not be a tick box exercise.

At Northumbria we were given excellent training on research up to PhD level ..so this gave our group the confidence to do all the interviews..Carers  interviewing Carers and S U interviewing S U…in all the interviews this has made a difference to our data as people related to us and disclosed more of their true feelings..perhaps this was because we had shared journeys and paths. We developed questionnaires, piloted them, and refined them.

After hearing all these stories I cannot help being amazed at human resilience in the face of terrible tough times and challenges..

Not only did we interview but we also did data analysis ..I never thought I would be able to do this but after all our training I had the confidence to sign up for it..it certainly sharpened our interviewing skills and kept us on task on answering the research project question..not just collecting hours of data. I also learned a whole new vocabulary …Nvivo and nodes…parent ones too..

I have been part of this research for over three years now and I have had many highlights..

What I loved was meeting every Wednesday and analysing the data; keeping a reflective diary and writing poems around recovery..I have been published in an American journal; doing many Carer interviews and sharing people’s life stories; being asked to present at conferences, INVOLVE and to the Trust; talking to students at Northumbria on our research; I also did a short video diary for NIHR ( National Institute of Health Research ) this has been used to train students too; and have been interviewed twice on the radio! At the INVOLVE conference our group was selected to be in a film also. It has been very exciting. We have been brave enough to step outside of our comfort zone.. And it has been well worth it. It has been part of our recovery too..that is being engaged in something meaningful and the added bonus of being for the benefit of others.

Presenting at St James

At the moment we are preparing our next three conferences on the findings to the trust and developing a toolkit. Also we have been asked to write about our journey and how we did it..not only academic papers but also a book..so we have a lot to do.

But this is how I like it and I think I speak for others in the group too..we will be sad when it ends..however I think when you do become involved it always leads to many other things..jobs for some, enhanced skills..now we are a trained group of researchers and can offer our own training and experience to others…

I am glad I have been valued as a Carer and service users in the group are also glad that their mental health experiences have been recognised and valued and able to be of benefit to others on the pathway to recovery.

It gave me hope things could be different and I would encourage everyone to become involved in research ..you do not have to have a degree..just valuable life experience. And empathy ..and a willingness to work and share together and learn from each other. It was great being part of a team.

Caroline Kemp

Choice & how people want to be treated: key messages from SUN

At the March Service User Network (SUN) meeting there was a discussion carried forward from the previous meeting. The SUN members wanted to explore areas that they would like choice in. The following two questions were addressed at tabletop discussions, and the responses are condensed:

1. What would you like choice in?

• Which service I am involved with
• Choice of worker and who I work with – gender, CPN/Support worker/care coordinator, access to different professions, seeing the same worker
• Appointments – flexibility in where we meet
• Involvement in planning care – reviews: how often, who attends, what is discussed; involved in agreeing care plans;
• Medication – the different options, including not taking any medication, easy access to a second opinion
• Treatment and therapy options – CBT, DBT, TC; what we do not want and what we do want, including ECT; access to complementary therapies; mindfulness
• Access to peer support – including courses (Mind), easy access
• Personal independence budgets
• Where I live and the things I do – like cooking, what I eat, and watching sport
• To have the right to make my own choices

2. How would you like to be treated as an individual within Mental Health and Learning Disability services?

• Treated as a person, not an illness
• As an equal – regardless of my characteristics
• Non-judgementally – with respect, compassion and understanding
• As an intelligent person – just because I have a mental health problem doesn’t mean I’m stupid – people can talk down to you!
• As an expert in my own issues and life
• As a customer – eye contact, honesty, humane, respect my sense of urgency in crisis
• To be talked to, listened to and liked – to be seen as worth getting to know and be with
• That my feedback is accepted – that what I say has value

These points will be discussed at the April SUN meeting and next steps in moving this forward decided. How would you like to see this – as a charter? a ‘best practice’ support? All ideas welcomed!

What is your view from a mental health professional, carer or partner agency  perpective? Feel free to comment…..

Please leave a comment if you have anything to add to these suggestions…….

The next SUN meeting is on Wednesday 2^nd April at St Chad’s Community Hall in Headingley; the guest speaker will be Dr Jim Isherwood, LYPFT’s Medical Director – click here to see the flyer. All are welcome to attend, but if you can’t get there, please feel free to post any comments or questions you may have for him here or email donna.kemp@nhs.net

Using data to improve care – a participation event

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LYPFT Planning Care Network – our first event of 2014!

You are invited to join us in a participation event that brings together service users, carers, health and social care practitioners alongside developers, designers and coders to explore using data to improve care.

Click here for full details of the event and the issues we are hoping to explore.

The event will take place on Friday 11 April 2014 between 10.00 – 16.00.

Time: 10am until 4pm
Location: Arthington House (part of Leeds Federated Housing),
30 Westfield Road, Leeds, LS3 1DE

We will provide lunch and refreshments during the course of the day.

To book your place and let us know if you have any specific requirements please contact Susan Portland by 31 March 2014: Email: s.portland@nhs.net or telephone: 0113 30 55972

Please note: for those eligible, reimbursement of travel expenses will be made on the day (receipt needed). If you have any questions or comments please contact donna.kemp@nhs.net

CPA – are we there yet?

I was asked by @@WeMHnurses to get involved in hosting a Twitter Chat about CPA. I agreed (with a fair bit of persuasion as I am quite new to Twitter).  You can read the blurb here or read on for a bit of background to inform the Twitter Chat; please do join in, it’s on Monday 10th March at 8pm.

Care Programme Approach (CPA) has been around since 1990 and is an umbrella term to describe the way that a person’s care, support and treatment are arranged in secondary/specialist mental health services through: 

1. Assessment
2. Coordination
3. Care planning
4. Review

Who should be ‘on CPA’?

Refocusing the Care Programme Approach – policy and positive practice guidance (DH 2008) sought to provide clearer guidance on the characteristics of those needing the support of the CPA framework (see p.13).

In addition, individuals within the following groups should be supported by CPA unless their assessment shows otherwise:

•  Individuals who have parenting responsibilities

•  Individuals who have significant caring responsibilities

•  Individuals with a dual diagnosis (substance use)

•  Individuals with a history of violence or self harm

•  Individuals who are in unsettled accommodation

Some people don’t need CPA but they should still have a care plan (can be a letter), a named lead professional and a review.

To summarise, the CPA framework in place; it considers those that do and those that don’t need CPA; it’s not new; it aligns with the way that different professions work (eg. nursing process); the value base is linked to the Ten Essential Shared Capabilities (2005).

So why, over 20 years later, do I wonder “are we there yet?”

The constantly changing mental health landscape necessitates us to reflect upon what we are doing and to ‘check’ that everything still fits. For example, the introduction of integrated care pathways (ICP’s) –  does this fit with a person centred, co-produced care plan? So the ‘are we there yet?’ question continues to arise but the reality is that the destination is not within our grasp, we get ‘rerouted’ when we think our destination is near. But this is ok; in our professional lives the constant is change. Here are some of the ‘reroutes’ to ponder in relation to planning care: 

•  CPA is linked in with performance reporting with Monitor and Mental Health Minimum Data Set informatics requirement and is included in the National Service User Survey ; results/reports from these tell us that there is a disconnect between the information that organisations hold and what people that access the services tell us about their experiences. How can these differences be explained? Do people who use services and carers/supporters know about CPA? Does it make any difference?

•  Personalisation and Recovery/Wellbeing are approaches that are prominent in mental health. How do these approaches work alongside CPA? Are we finding any conflicts and if so, how are we working through these?

•  How do we ensure that the person is at the centre of their care, support and treatment and that care plans are co-produced?

•  And of course, the question of austerity – how have the NHS cost savings impacted on how we provide CPA? How are mental health professionals maintaining quality?

Share your views/experience

There is a digital conversation guest hosted by @donnajkemp planned for Monday 10th March at 8pm on Twitter to discuss these points; do join us at #WeMHNs;  alternatively post your comments on here.

Click here for more info about the ‘Twitter Chat’ and for links on how to use Twitter

@WeMHnurses is part of the @WeNurses community and is curated by @mrsgracepoole and @NatalieMHN

Involving people in Care Coordination training

‘The Care Coordination process and practice’ training is currently available to all LYPFT staff members who are involved in supporting the delivery of Care Programme Approach (CPA); it runs 1-2 times each month and is available in Leeds and York venues.

The training explores best practice in applying the CPA process and meeting individuals needs and includes:-

• When to use CPA
• Transfers and Transitions
• Roles within CPA
• Review Processes
• Goal Setting and care planning with service users
• Crisis planning
• Carers

To further develop the training we are looking to involve people who use the service and carers/supporters in the training; this promotes the recovery and wellbeing ethos. So, to move this forward, there are a few points I would like you to consider from your perspective and to share via ‘comments’ please:

• What methods of involvement could be used/would work well?
• How can we ensure that people have an equal chance of being involved in the training?
• Do you have experience of involving people in training?, if so, can you please share the good practice

Also, if you (using the service or carer/supporter) or someone you know would be interested in participating in the training, please let me know via email donna.kemp@nhs.net and you can be involved as this progresses.

Update

Meeting held on 15th Jan 2014; ideas were shared as to how we can ensure that service users have the opportunity to be involved in co-facilitating the training and that service user experience is conveyed throughout the training.

Ideas to achieve this were to take the 2 approaches together; this blend would ensure some certainty on content at each session and provide opportunity for people to get involved in co-facilitation:

1. Co-facilitation of the training, either in half days or full days
2. Video/vimeo of people responding to specific questions eg. how were you involved in planning your care?

The video/clip/vimeo might be of the person sharing their responses to questions or, if the person prefers to be anonymous, to utilise animation. Here is an example of how this worked in relation to Lived Experience in the Workforce

It was acknowledged that the opportunity to get involved in either aspect of the training should be available to all; and that all groups of people should be represented including people living with dementia; younger people; people with learning disability; adults and older adults.

Question – How do we access people from different backgrounds and ensure all ‘groups’ are represented?

If you (or someone you know) are accessing mental health services  or are caring/supporting someone who is, and might be interested in helping to co-facilitate training or be willing to answer some specific questions about your experiences of care, support and treatment or of caring/supporting someone, then please contact donna.kemp@nhs.net

Meeting

You are invited to attend a meeting on the 20th November to hear more about the Planning Care Network.

There are 2 venues:

Sycamore Suite at Bootham Park Hospital, York 10.00 – 12.00

Becklin Centre Training Room 3, Leeds 14.00 – 16.00

It would be great to see you there, but if you can’t attend that’s ok; just check back here to see whats going on.

Donna