Jenny Weinstein has responded on behalf of the LINk Executive Committee and members and we reproduce below what she has written to Dawn Warwick Director of Adult Services, Wandsworth Council. You can see the Council’s consultative document here (filed under Resources | Health & Social Care on the navigation menu at the top of the page).

LINk

Wandsworth LINk has a role within the borough to enhance the involvement and engagement of service users, patients and the local community in decisions about the development of NHS and local authority social services (not child care).

Wandsworth LINk welcomes the initiative of the Adults Services Department to begin a dialogue about how to extend involvement and engagement of service users and is keen to work in partnership to implement the proposals. Wandsworth LINk is fully in support of the values and philosophy underpinning the Adult Services User Engagement and Involvement Strategy.

The Consultation

Time Scale

The time scale for this consultation was the month of April in which Easter fell. This meant effectively 3 weeks. LINk requested an additional month but, in our view this was really not long enough to consult on such an important issue.

Extent of user/community participation

The Council’s own consultation was undertaken through a series of open meetings attended by a total of 83 people. In our view, consultation would have been more effective had it been possible to organize – with good notice – more visits to resources where users are likely to be.

In order to consult our service user and carer constituency, LINk set up two meetings at which Council officers were invited to engage with users about the strategy. A total of 30 service users/carers were involved. Unfortunately, making the necessary arrangements for transport, finding suitable dates and venues meant that these meetings did not take place until early June and there were only two meetings – hence this response did not meet the Council’s deadline and only represents the views of 30 users

LINk appreciates that the Community partners group of users and carers played a key role in the development of the strategy under consultation. It would have been helpful if the document had explained their involvement and given a direct voice to their views on the proposals. They were still referred to (P25) as `being given more of an understanding…` rather than being acknowledged as experts who give professionals an understanding…

What users and carers want

Overview

From the growing and extensive literature and research (refs available), Wandsworth LINk is aware that the majority of service users want the following from the services they receive:

• To be listened to
• To be treated with dignity and respect
• To have access to a named person with whom they can build a trusting relationship
• To be able to rely on services – i.e they do what they say they will do at the times agreed
• To be kept fully informed of developments
• To be alerted in advance about changes and, ideally to be asked their view
• To have access to responsive out of hours emergency support for crisis

Feedback from LINk meetings

All of the above issues were raised by users attending the LINk meetings where the following points were also made:

• User involvement in decision about when to withdraw services – not based on pre-ordained criteria i.e records should indicate service users’ and carers’ views about the absolute essentials that they perceive they need in order to live independently/support recovery
• Regular reviews of services to ensure that they continue to be adequate/relevant
• Need for a more consistent system and data base for consultation – not random or `just the usual suspects`
• Need to ensure that users do not have to `tell their story` again and again when their circumstances change and they need to reapply for services – passport system – use of service user’s own assessment of their needs?
• Improved recording so that as information is passed between professionals/agencies, errors do not arise
• Self assessment should really mean self assessment – not people telling users what their needs are
• More seamless working across health and social care
• More consultation about service closures – let people know exactly what is proposed in the full project plan; improve communication and use simple understandable language (e.g Atheldene service changes)
• Extension of advocacy services to ensure users` views represented
• Significant improvement needed in communication between services, service users and carers.
• Need to consult and listen to carers (especially people in fear of violence from user)
• Need to safeguard vulnerable isolated housebound people whose voices are not being heard and who are unlikely to challenge decisions that they are not eligible for services.

Consulting and engaging users – need for a local neighbourhood approach.

Many adult service users, either because of age or disability prefer to remain in their local vicinity. Even if transport is provided, they do not usually want to travel for more than 20 mins each way and some are reluctant or unable to travel.

This does not appear to be acknowledged sufficiently within the strategy. In order for these groups to be consulted, there needs to be a system of involvement and engagement that does not require these individuals to attend centrally organized meetings.

Reference groups

While recognizing the value of establishing a reference groups for users and one for carers, LINk would warn of the following difficulties that could arise in the absence of a stronger grass roots user involvement movement being established within the Borough:

• The reference group members may not have a broad constituency – need to include diverse groups including people with sensory impairments and people from different cultural and religious groups and those with diverse life styles
• Reference group members would be used for consultations on every issue and could become burnt out
• Reference group members could become perceived as an extension of the Council if they are not empowered to play an innovative or leadership role rather than a passive role in service development. i.e they need to develop the agenda and be involved from the start.

We appreciate that a great deal of work has gone into establishing the current Community Partners group and existing partnership boards involving users and carers within Wandsworth and can see that individuals from these groups will play a valuable role in the new reference groups. However, it is important to ensure that systems are set up to seek and enable new members to participate.

Existing user networks established by WCA for people with learning disabilities and people with mental health problems and the Older People’s forum are much valued by service users and provide useful forums for user consultation. Service users with physical disabilities were previously supported to meet in the same way but funding for their forum came to an end. Service users with physical disabilities and sensory impairments have told LINk that they would value being supported to meet together and to be consulted as a user group and that, although they welcome the idea of a User-Led organisation, this would not substitute for their forum.

Working with the Voluntary and Independent Sectors

As set out in the document, WCA and the carers’ centre have undertaken some excellent pioneering work of involving and empowering service users and carers. However, the document does not adequately acknowledge the rest of the third sector in Wandsworth and does not mention working with them to facilitate engagement at a local level. The third sector within Wandsworth has access to a wide range of service users, including those from less heard groups and could therefore play a vital role in the engagement strategy.

Summary of Recommendations

1. User involvement and engagement is a long process of relationship building and trust building. There are now a number of successful models being operated in other areas. It may be helpful for those implementing the strategy to have some opportunity to meet active service users in other areas to hear how their involvement systems have been developed.

1. A primary role for the reference groups would be to get out into the community and speak to as many users and carers as possible in order to represent their views.

1. The reference groups might work with officers to develop a strategy to reach seldom heard groups, using existing agencies in the Borough who are building these relationships such as Wandsworth Empowerment Network and BME groups.

1. It is suggested that a Borough wide data base of service user and carer groups and of individual users and carers interested in being consulted should be developed jointly between LINk, the Council and the NHS.

1. From a LINk discussion with the Director of MH Services at Springfield, his understanding is that the Adult Services User Involvement Srategy does not cover his service. Given that MH services are integrated health and social care services, we suggest that a joint strategy for user involvement in mental health be agreed and published.

1. LINk suggests that service user-led training for all staff involved in the delivery of services and a Departmental commitment to the strategy would go a long way to meeting users’ stated requirements for full involvement and engagement.

1. P.25 viii We suggest that the Council should commit to user involvement in specific activities such as involvement in staff interviews, own care plans, peer advocacy, strategic developments, evaluation, tendering process, staff training etc etc.

1. P.27 Suggest that a Newsletter should be published more frequently than annually and that other innovative ways should be developed for the Council to communicate relevant developments to specific groups.

Relationship with LINk.

LINk is keen to work in partnership with the Council on their strategy and to be as helpful as possible. However, users and carers and other groups that we have encountered have also stressed the importance of LINk retaining its independence as an organization.

For this reason, we feel it is important for service users and carers involved in Council consultation bodies to make their own decisions about whether or not they join LINk and that Newsletters and e- bulletins etc need to be separate although, of course, we can make contributions to each other’s publications.

Jenny Weinstein June 2009

(on behalf of LINk)