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Devising an involvement strategy for carers

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We all involve patients’ relatives, friends, partners and carers to a greater or lesser degree in the provision of healthcare. However, if we are not careful this involvement can easily become ad hoc, lack direction / prioritisation and resources. A ‘strategy’ or framework can help you work out the best way to proceed. West London Mental Health Trust’s Sue Cummings produced just such a strategy………..

What’s it all about then?

We all involve patients’ relatives, friends and partners (carers) to a greater or lesser degree in the provision of healthcare. However, if we are not careful this involvement can easily become ad hoc, lack direction / prioritisation and resources. A ‘strategy’ or framework can help you work out the best way to proceed. West London Mental Health Trust’s Sue Cummings produced just such a strategy………..

What is my role?

As Head of Patient and Public Involvement (PPI) I was asked to write the strategy.


What’s different about what we are doing?

When I drafted the strategy, I was not alone in my office. Or isolated from the voices of carers.
I arranged a series of meetings and invited a range of carer group representatives to participate, as well as trust staff with an interest in carer issues so that I could be reassured that the strategy would be meaningful and not sit on shelves gathering dust!


When did I start this?

I came into post as Head of PPI in 2004 and that year I was asked to ensure that the trust had a Carers Involvement Strategy, highlighting the commitment of the trust to carers.

The strategy was drafted in 2005 and is due for review at the end of this year (2007). The strategy has proved itself to be a helpful framework and realistic guide for staff, showing that with the key people present you can get the ‘writing bit’ right and produce a truly usable document.


Reason for the Innovation

It is a fact that the trust I work for values carers and the carers’ role and acknowledges the excellent, often unseen work that carers do to support those they care for, as will most – if not all – trusts.

However, one of the key things about the strategy is that it is not simply words explaining the trust commitment to carers. Although that is important as:

Carers want and expect to be involved

Carers have a right to be involved

Carers are experts by experience

Carers’ feedback can lead to better services

The content of the strategy was driven by what carers said they wanted and included:

A useful resource pack - a toolkit for staff. A toolkit that can be used by trust staff to help them help carers be more involved in trust business. It describes the trust commitment and expectation on staff to ensure access to information, training and resources to enable real and meaningful involvement by carers.

Secondly, there are a lot of opportunities for carers in trust business but we wanted to ensure that there was also a consistency of support, training, payment, good practice and initiatives across borough or service area boundaries and we wanted to set out the expectations on staff and service area heads when involving carers.


Some of the Challenges

There are challenges of course…….

Staff need to be alert to use of jargon when writing documents for staff that carers or service users will also use/access, as this will be a block to understanding and engagement
Time is often a factor for carers. So getting carers involved in the writing of the strategy needed some patience to fit in with individual diaries
Engaging carer representatives. For carers who are representatives is a very difficult task. Gathering and filtering views from fellow carers on a variety of topics is challenging
The main challenge is about convincing carers that they need to believe in the project
Carers may have been asked in the past to be involved and they may not have felt heard, or listened too. Staff have a hard task in reassuring carers that this time we really do mean it, that we want to hear what you have to say, we need your feedback and involvement.


What have I learnt from the experience?

It was a fabulous way to write a strategy from my point of view.

It was stimulating, interesting and felt more meaningful and real due to the direct input from carers.

I would highly recommend it to others who are tasked to write a document for carers or service users.


How have patients and staff benefited?

Staff have benefited by

Having a clear framework and resource pack to undertake carer involvement
Patients have benefited by

Helping carers to be better involved in decision-making and providing opportunities to feed back their experience of the service is the best way of helping patients.

TIPS

1. Arrange meetings well in advance so that carers can have the best chance of attending.

2. Ensure that you ask carers the best times for them, as well as the day.

3. Identify a local lead for carer involvement in each service area. This is important to tap into the important local issues for carers. And invite them to the strategy writing meetings.

4. Don’t expect this to be a quick process. To ‘do involvement’ can take time. Give yourself permission to take as long as it needs. Just be mindful that meetings need to be productive and start on time.

5. Get any papers associated with the meetings set out in good time so that people have a chance to read them and prepare. This will make the meeting go more smoothly.

Sue Cumming, RMN, BSc (Hons), MBA

Head of Patient and Public Involvement, West London Mental Health Trust

Postal address: WLMHT, Clinical Governance Dept, Magnolia Way, Trust Headquarters, Uxbridge Road, Southall, Middlesex UB1 3EU

Email: sue.cumming@wlmht.nhs.uk Telephone: 020 8483 2073

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