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Wardipedia – 45. Patient involvement

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Co-piloting

Introduction

The extent of service user involvement, or ‘co-production’, in many aspects of inpatient care, from membership of Trust boards to imaginative and genuine control of their care planning is impressive and heartening. These are richly illustrated by the ward examples below but we’ll nip across the Atlantic for a particularly radical take on patient involvement, from the very psychotherapeutically oriented Menninger Clinic:

For decades at The Menninger Clinic, we have had a strong interest in means by which we might foster a therapeutic alliance in treatment. The therapeutic alliance between patients and treaters requires a degree of trust and a sense of acceptance, but it also entails collaboration, which we construe as the patient’s making active use of treatment as a resource for constructive change. Collaboration is a two-way street in which patients and clinicians are working toward shared goals. We have aspired to develop a psychoeducational program that fosters mentalizing in the context of collaboration. And it is this kind of thinking that led us to make patients actual rather than virtual members of the multidisciplinary treatment team.

This framing of patients as part of the multi-disciplinary team both reflects and reinforces the many benefits to:

  • Patients (eg a sense of control over their situation, recovery and future, improved self-esteem and engagement)
  • Staff (eg the satisfaction of genuinely and effectively power-sharing with patients)
  • Other service users (services are simply better when co-designed with the people who use them, whether mental health hospitals or football stadiums)
  • The hospital and Trust (eg more effective treatment of patients, higher satisfaction rates, lower level of incidents, less wastage etc etc)

The first step in patients being influential whether on an individual, ward, hospital, Trust, local, regional, national or global level is for them to have the relevant information. Providing this effectively is in itself quite an art, as it requires staff to have a strong understanding of each person’s cognitive, emotional, educational, linguistic and communication situation. And the different ways of ensuring that patients receive information at a time, in a format and with the support that they need to be able to understand and make use of that information. See Idea #10 on Creative communicating.

That’s more than enough for here, so we’re not going to cover a Trust’s legal requirements, regulatory expectations etc. Not really our thing. OK> We will just mention that there are NICE guidelines on shared decision-making on mental health wards.

Ward examples

Information

  • An information file in each bedroom which contains information about the ward.
  • Monthly Surgeries on the In-patient units for patients and carers
  • The timetable and information board is now in place and is proving very positive, and patients are now asking regularly for drinks, and to have their hair done etc. now the information is displayed.
  • There is a main diary for organising all patient and unit activity. Also patients have a range of individual methods of keeping organised, according to personal choice, including calendars, weekly plans and white boards.
  • Interactive weekly activity time table – so that both service users and any member of staff can write on the board what activities they would like to do
  • A ‘hotel’ type pack accessible on each ward with available resource information.
  • Competition with display in reception – Design a Placemat. Get them printed. Will include information – eg that you can have a copy of your care plan, local resources, 5 a day, puzzles, TV listings.
  • Rethink Advocacy.
  • Weekly drop-in medication clinic.
  • Local community organisation supports patients with Direct Payments.
  • CAB clinics on ward.
  • Clients have compiled a ‘Day in the Life’ guide for new clients, giving a sense of different aspects of life in the hospital.
  • Service users can display their own pieces of information and removing out of date posters/leaflets.
  • ‘Points of you’ now on ward.
  • Sharing board for clients use only for appropriate jokes, humour and comments.
  • The Therapy programme is reviewed 12 weekly, and patients are encouraged to suggest activities based on personal interests. This enables patients to co facilitate groups.

Consultation

  • Consultation and focus groups with service users on everything from meals, facilities, visiting arrangements to choice of furniture (went shopping), colour schemes.
  • ‘Talkback’ box on each ward.  At their own leisure service users put suggestions in the box which are in turn looked at fed back to local community meetings. All the suggestions are taken to the monthly service user meeting. There is also a monthly PALS talkback newsletter.
  • Service user and carer groups
  • Patient focus groups
  • Patient representatives attend meetings at Corporate and Service level that are concerned with decision making. Feed back in given and obtained at Community Meetings. Local decisions are facilitated via ward representatives attending the Clinical Team Meetings
  • Patients on some of the wards have also been involved in our annual review of our Operational Policy. They are currently reviewing sections on ward expectations and new patient information.
  • Patients are given the opportunity to meet with the Ward Manager if there are specific issues regarding the management of the ward that they wish to discuss.
  • If a service user has had rapid tranquilization then there is a process for them to write about their experience
  • Patients were involved in choosing which artist to commission for the displayed artwork
  • PALS contribute to Patient Forums around the service
  • Our approach to working through the [Star Wards] action plan was to start off by finding out how many of the ideas were already implemented on the unit. To do this we needed the input from as many patients and staff members as possible.
  • There is a weekly amenity budget which can be used to purchase items for the unit environment, and patients are consulted and encouraged to make choices as to how this money is spent.
  • Patients are also encouraged to make choices that affect the unit appearance and environment, including artwork, decorations, colour schemes, wallpaper patterns, furniture, etc.
  • Patients can have individual sessions with the nurse on the night shift if there are any unresolved issues from the day.
  • Patients are able to request improvements to visitors’ facilities and supplies.  Examples of changes made following patient requests include new furniture and updated selection of magazines/ games etc.
  • At the Medium Secure Unit patients are encouraged to participate in activities with a view to developing skills to hopefully eventually instil confidence to lead their own group.
  • Each ward has a patient representative who attends Partnership Forum meetings on a fortnightly basis to voice suggestions, issues and/or concerns raised by fellow patients with regard to the ward community and development of the service.
  • Patients are encouraged to discuss issues or areas of concern with their key worker.
  • Service User Experts work closely with mental health professionals and use their lived experience as a team member on peer reviews.
  • The hospital has a patient representative on the Clinical Governance group this is an active role and the patient was voted for by the patient group.

Care planning

  • Patients are encouraged to write their own care plans and formulate risk assessments.  They are encouraged to liaise with the MHA administrator to arrange managers’ appeals and tribunals
  • They are developing self-assessment in CPA reports.
  • Each patient has a personal recovery file that they keep in their bedroom and take with them on discharge.
  • A self assessment sheet that patient completes daily to monitor own progress; to be discussed with allocated staff of the day/named nurse. The form was discussed at the community meeting.
  • A variety of staff are always available to patients to discuss issues surrounding care plans. Key Workers have dedicated time each month to go through care plans with patients and collaboration is encouraged where possible.
  • Laptop can be used to type out care plans with patients present, if required.
  • Collaborative care planning is actively encouraged for all our patients, to a level that is suitable and meaningful to the individual, taking into account their capacity to understand the information. Input from advocacy and relatives is encouraged to support with this.
  • As a procedure to promote transparency and inclusion, patients have copies of their own care plans and Section 17 Leave forms.
  • Patients have many opportunities to present their own profile for staff – for example each patient is encouraged to write and submit their own CPA report, Recovery tool, Self-harm tools etc.  Within My Shared Pathway patients have the opportunity collaborate on MDT and CPA reports.
  • Patients are offered the opportunity to write their own life history information which includes past experiences, likes and dislikes, etc. If the patient is unable to contribute to this then relatives are approached. This information can then be shared with the staff team so that everyone has a better understanding of each individual and a person-centred level of care can be delivered.
  • Patients can ask for their notes, comments, letters, whatever to be put in medical records. Default position is to agree unless it’s obviously inappropriate, including excessive.
  • All patients are encouraged to take an active role in their Care Planning and Risk identification and management through their attendance at the Care Planning and START risk assessment meetings. This can be challenging for patients but encourages responsible decision taking.
  • Patients complete a Self Assessment on admission with their named Nurse. This is an opportunity to have some ownership of information relating to their care.
  • All patients are provided with a personal diary on admission, they are encouraged to bring this to daily planning meetings and record any appointments. They are given vouchers as incentive if they do so each week.
  • Patients are provided with a Patient Daily Self review.
  • Each patient is entitled to £300.00 on admission, in their WOW pack, to aid their recovery and to purchase clothing and materials to allow them to be fully involved in their active rehabilitation programme.

Staff recruitment and training

  • The clients involved early on set up the interview criteria and scoring system, eg noting eye contact, friendliness, body language. (Clients aren’t put off by people who are nervous.) There’s an official HR application form in addition to the one designed and used by clients which asks questions such as:  How could you help me with problems with my feelings? How do you cope with problems with your feelings at work?
  • Patients are also involved with the staff interviews such as consultant interviews.
  • Patients have devised a set of questions they would like asked during the interview stage of staff recruitment.
  • 3 service users on ward staff team.
  • Ex-patients return to talk to staff about what they found valuable and less so during their admission.

 

Doing and creating

  • A service user has set up and runs a clients’ support group, called Mind Over Matter
  • Recently patients were given the opportunity of attending a course on ‘how to do research’. This has now give them the skills to embark on their own research projects and they have decided to do the first of these in collaboration with staff but on topics of their choice.
  • The service user consultant chairs daily meeting on Wednesdays
  • Annual Reports – last one compiled by service users.
  • Hospital shop is staffed by patients. (It’s a medium secure unit so patients are there for some time.)
  • Recruiting a service user to be involved in attending the Star Wards and Acute Care Forum, for which they’ll be paid.  A person specification has been produced and the post will advertised through a mailing list of service users and carers. The successful applicant will attend the Patient Forums on the wards and act as a conduit for communication between service users on the wards and the 2 groups.
  • Patients help run the Library.
  • Two patients have organised the ward library, despite previously avoiding working with others. They told staff that it has felt really nice to have a role.
  • Involvement workers are ex-patients and each unit is allocated several hours each week.
  • It was realised that many of our patients have exceptional talents and skills that others were interested in learning so ‘patient-led’ skills sessions are now arranged. Patients teach origami, sugar craft, baking, cooking, art, music and basic computer skills. This has a positive long-term impact on patients’ self-concept by improving self-esteem, confidence and providing patients the opportunity of ‘giving’ something of themselves in a safe environment.
  • Several patients on the unit visit reception to collect post and interact with staff during this.

Involvement In Care

  • All patients have a personal recovery file to record achievements and progress, which they can showcase at CPA meetings.
  • All patients are encouraged to take an active role in their Care Planning and Risk identification and management through their attendance at the Care Planning and START risk assessment meetings. This can be challenging for patents but encourages responsible decision taking.
  • All patients are provided with a personal recovery file to collate certificates, achievements, reflections and details of progress.
  • Self help books including Mind publications are available in libraries and communal areas. Any individual self help material can be provided through psychology and OT.
  • There is a patient planning meeting at the start of every day. Patients can choose to reflect on a daily basis using Patient Daily Self review. This can be used to structure Key Nurse or Key worker weekly 1:1s or a patients can request additional 1:1 time to reflect on this.
  • There is an allocated patient therapy budget each week. Patients are able to use community meeting each Friday to plan weekend activities paid for from this budget. They are able to plan, with the OT department how to spend this on any items that will asset with rehabilitation.
  • The Therapy programme is reviewed 12 weekly, and patients are encouraged to suggest activities based on personal interests. This enables patients to co facilitate groups.
  • Patients complete a Self Assessment on admission with their named Nurse. This is an opportunity to have some ownership of information relating to their care.
  • All patients are invited to develop their own care Plan in conjunction with the MDT

 

Patient examples

  • As ward rep I have gained experience in chairing meetings which has given me confidence and is very satisfying.
  • I carried a notebook with me and jotted down any good thoughts I had for the future.
  • I made a list of what I wanted from my stay in hospital and gave it to my psychiatrist. It was then suggested that once I was in a good mental state that I may wish to do an advance directive which allows me to say for example what type of medication I preferred to be on, and what I am like when I am feeling well.
  • I made a real effort to wash and wear clean clothing everyday – no matter how long it took me.
  • I wore my best comfortable clothing. It was important to me to look good and it gave me confidence.
  • We had a comments box on my ward, which gave me a chance to speak up about anything I didn’t like about the ward, but I also put in positive comments especially about individual members of staff.
  • I used the Recovery Star on the ward. A member of staff did it with me. I found it helpful to break each part of my life down into manageable chunks.
  • The more control I had over what I did each day, the freer I felt. Even if I still couldn’t leave the ward.
  • Discussion not dictation makes a happy ward.
  • As much choice as possible was given to us whilst we were on the ward. It created a real sense of self-led recovery and gave us back some of the control.
  • One thing you have a lot of on the ward is time. It sounds silly but I got my wife to bring in a diary so I could plan out my time. Even the little things like going for a walk at a certain time.
  • I have a folder which I put notes, leaflets, care plans and reminders in.
  • Some days I can’t make any decisions at all so I start small and see how far I can get.
  • Coping mechanisms don’t have to be boring! It is important they are tailored to your needs and your likes.
  • Talking as a group about our coping mechanisms helped each of us come up with new ones.
  • I hate having too much free time to think so at the start of each day I would plan what I was going to do and when and it made me feel much more able to cope with the day ahead.
  • It can feel like staff have power over you because ultimately they’re the ones with the badges and keys. But really it works best when everyone shares the power.
  • The staff really encouraged me to be independent as much as possible. Like, they were always there but ultimately I knew it was my life and my responsibility.
  • Rules, and the reasons for them, were explained to us so that we felt part of the process.
  • As a group we took a lot of responsibility for organising little evening activities. It really helped us all to bond.
  • Any way I can take responsibility is important to me otherwise I’ll get too dependent.
  • We arrange our own groups on the ward sharing tips and looking at self help books together.
  • Getting involved in my care plans helps me feel in control. The nurses give me blank care plans for me to write on and hand back in.
  • I kept myself busy by making tea and coffee for others it made me feel useful.
  • My CPN suggested that I write my thoughts down but it was too scary to see them on paper. Like it made them more real. But I tried it again in hospital and it felt safer because I knew there was help there if I needed it.
  • I couldn’t cope with choice everyday and that was ok.
  • I like helping being part of organising ward activities; it gives me a real sense of pride and achievement to see everyone involved.
  • I always like to be kept informed about my options and feel like I had a say in them.
  • I like to understand the triggers for a loss of willpower. I like to plan for those moments.
  • I am happiest when I feel like I have a purpose on the ward.
  • The staff and patients really felt like a community rather than opposing sides.
  • We had a special lady we could book an appointment with to talk about our section and she knew everything there was to know!
  • I just felt overwhelmed with all the information on my section so I asked the staff to break it down into three minute chunks each day.
  • You kind of find your own role on the ward. It passes the time and you can help others.
  • I was scared of having any responsibilities but now I am scared of losing them. I treat them with great respect.
  • Working with the staff on my care plan made me feel like I was taking an active part in my recovery and that my views were valued.
  • We had a group specifically to look at issues surrounding being on a section. I picked up a lot of useful tips from other patients on how to make it more bearable.
  • My life ‘outside’ was in tatters. I needed to make sure my ward life had substance so I could re-build.
  • I need to feel like I am of value.
  • I clean the patients kitchen every day. I don’t mind doing it. It gives me something to do and means I can give something back to the ward.

 

Categories: Involvement, Wardipedia
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