Case study summary
The NHS wants to include patients in the development of services to improve the way it delivers care in an effective and compassionate way. Networks, partnerships and forums help the NHS to engage with more patients and reach specific groups to gather different perspectives. A good example of patient involvement in service development has been set up by the Anxiety and Depression Improving Access to Psychological Therapies Network. To obtain feedback on its activities, seek an active contribution to new projects and improve the way its services deliver care, the network reached out to former patients across the Thames Valley through the formation of a Patient Forum.
Any way that I can be used for the good of others, I would be most definitely interested to assist,”
Patient Forum member, Anxiety and Depression IAPT Network
The Anxiety and Depression (A&D) Improving Access to Psychological Therapies (IAPT) Network covers a large and diverse area including Oxfordshire, Berkshire, Buckinghamshire and Milton Keynes. Its four member IAPT services are among some of the best in the country in terms of patient outcomes and innovative service delivery.
Following its launch in December 2014 the A&D IAPT Network wanted to find a way for at least two former service users from each of its partner psychological therapies services to take part in a Patient Forum, with the support of a local member of staff. The objectives of the Patient Forum included offering feedback and suggestions for improving IAPT services, to be consulted on proposed work programmes and projects, and actively involved in prioritising, shaping and driving aspects of future projects. The Patient Forum is an effective way of ensuring timely contributions to the network’s activities from patient representatives.
How it worked
A patient and public involvement (PPI) lead was appointed among staff members for each of the network’s IAPT services. Each PPI is responsible for recruiting and supporting patient representatives locally.
Ineke Wolsey, A&D Network Manager, said: “Most Patient Forum members are involved in local activities such as peer support events, within and outside the IAPT service. Their feedback is passed onto the local service or the A&D IAPT Network’s leadership for collective reflection and action. A good example is the variation in GP awareness of IAPT services which, following feedback from patient representatives, led to increased awareness-raising activity where needed.”
The first Patient Forum meeting in July 2015 discussed and agreed a number of important aspects including eligibility criteria for membership – former service users, not those currently in treatment, and time commitment – a minimum attendance of 2.5 hours every second month. The expectations and responsibilities of patient representatives and staff members were confirmed, along with the forum’s core membership of eight patient representatives from all services, the A&D IAPT Network manager, a senior researcher, and PPI leads.
Impact on service activity
The Patient Forum now provides input into all aspects of the A&D IAPT Network’s activity – shaping and informing its work with the aim of continuously improving patient outcomes across IAPT services. Patient Forum members have played an active role in
- Helping prioritise the network activity within all IAPT services – for instance a relapse prevention work programme, re-branded Staying Well, started as a result of feedback from all patient representatives on the lack of post-discharge support,
- Developing the ‘Durability of clinical gains’ and ‘Maintaining therapeutic gains’ questionnaires, both of which are part of the network’s relapse prevention programme,
- Designing a ‘Therapy support and follow-up’ digital app.
Developing the Patient Forum’s role
The Patient Forum is well regarded and its value recognised both within the A&D Network and further afield. It is anticipated forum members will continue to play an ever-increasing role in the network’s future activities.
Ineke added: “As we can demonstrate a high-level of involvement from our Patient Forum with minutes from all meetings published on our website, the A&D Network is seen as delivering on the key NHS requirement of involving patients in healthcare. This means the network is viewed favourably by partner organisations within the healthcare and academic spheres, in the knowledge the patient’s voice is central to all we do and this has resulted in many productive partnerships to improve patient outcomes.
“The Patient Forum has expressed a wish to start a project in 2019 focused on mapping the practical support available for patients during and after therapy. As a result, from November 2018 we will welcome an employment advisor to our forum to ensure we will have representation on all matters related to getting back into and staying in employment post-therapy.”
Tips for setting up a Patient Forum
Recruitment to the Patient Forum is initiated at the time of discharge when the patient is asked whether they would like to be contacted about service improvement initiatives. Those interested are provided with information including the patient and public involvement strategy and an overview of current projects. Those who join the forum are invited to meet their PPI lead and the network manager to ensure they have the support they need.
IAPT and other services intending to introduce their own patient forum may wish to consider the following advice in light of the experience of service user consultation at the A&D IAPT Network:
- Every meeting must involve real work – something that needs problem-solving or guidance, or a topic that has come up in general feedback and discussion. For example ‘How do we engage patients in our research?’ or ‘How do we increase awareness of the availability of talking therapies?’
- Recognise and encourage the social dimension of a patient forum and the opportunity it provides for building relationships between staff and former patients,
- Forum members’ roles and responsibilities should be clear, together with clear lines of accountability to ensure actions are completed or followed up,
- Have a ring-fenced budget for patient forum activities,
- Meetings should be held at a convenient time, with easy parking – supported by a working supper to strengthen relationships, and large measures of fun!
What A&D IAPT Network Patient Forum patient representatives say …
It gives a great opportunity to give back and try to help other people who have similar issues that I had. It feels good to be able to have an input into the way the NHS develops and try to shape the service from the perspective of the individual rather than for what is most convenient to the NHS.
I do think the Patient Forum makes a difference. A good example is the article published in the British Sjögren’s Syndrome Association newsletter about the support available to patients who suffer with Sjögren’s and depression and anxiety. It was a joint effort between myself and staff members from the Patient Forum. As well as raising awareness of depression and anxiety symptoms, we listed all the IAPT service phone numbers patients could ring for help across Thames Valley.