Patient and Public Engagement

In this edition of their newsletter, the CQC announces the publication of its Voices Into Action manifesto – their commitment to giving people a bigger say in how health and social care services can be improved. They consulted widely when putting it together and have given good feedback (in line with one of their Voices in Action commitments) on the action they took. telling us for example that the title of the document was changed as a result of feedback at events. The section on governance was clarified and decisions made about which advisory groups the CQC was going to have initially.

The full report of the consultation is available via their news release.

Looking for independent committee members

The Commission is looking for independent members to serve on its Audit and Risk Committee and you can see how to apply here.

You can sign up for the CQC newsletter online.

The full summer newsletter is now available to read here (opens in Adobe PDF).

News in Brief

Jeremy Ambache sets out the four Wandsworth LINk priorities selected out of the 29 suggestions received. Jeremy writes “It was not an easy decision for the Executive. The debate we had at the open meeting was heated and vigorous- but that is good as we had difficult choices to make.”

The four priorities are:

1. Transforming Adult Social Care
2. Health Consultations
3. User and Carer Engagement
4. Hospital Discharge and After Care.

The newsletter also updates you on the consultations on Polyclinics, news about the Springfield Developments and the response made to Adult Services Department of Wandsworth Council on their Service User and Carer Engagement Strategy. A new opportunity to participate has come with an invitation for the LINk to send a representative to the steering group for widening access to psychological therapies.

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)

Your chance to debate directly with senior NHS Wandsworth managers at the LINks Meeting 8th June.

Not just one but two senior managers from NHS Wandsworth are coming to present to us ….. and then listen to LINk member’s  and patients views on important issues for users of health services.

Di Caulfeild-Stoker Director of Provider Services NHS Wandworth  will talk about plans to separate out the community health services from the commissioning functions of NHS Wandsworth. What is the preferred organisational arrangement for the new body? see our news items on provider services posted on 22nd April this year for information on what this is and what it might mean for users of these services. You can see the topic discussed (they call it ‘Externalisation’) in the April 2009 Wandsworth Board papers here

Rachel Miles Associate Director of Strategy will talk about the current plans and public consultation on GP and polyclinic services in South Wandsworth. Do you want polyclinics and if so what services should they provide? For more about this consultation see our news item on 5th June with links to the consultation document and a questionnaire for you to complete after you have heard what Rachel Miles has to say.

Both will give their talks after we have got through the agenda for the Executive meeting

All are welcome to come along and listen and have your say!

The formal consultation on the future of health services in “South Wandsworth” is now live on the PCT’s website and runs until 7^th September. LINks members and others are invited to hear all about it directly from Rachel Miles of NHS Wandsworth at the LINks meeting on Monday 8th June at Earlsfield Library, 276 Magdalen Road, SW18 3NX.

You can download the consultation document from the site and also complete the questionnaire online if you wish.

Note the dates of the other public meetings which have been arranged to discuss the proposals:

7pm on Thursday 18 June 2009
Balham Library
16 Ramsden Road
Balham
London SW12 8QY

7pm on Thursday 2 July 2009
Anchor Church Centre
273 Garratt Lane
Wandsworth
London SW18 4DU

7pm on Tuesday 7 July 2009
John Parker Lecture Theatre
Atkinson Morley Wing
St George’s Hospital
Blackshaw Road
Tooting
London SW17 0QT

As well as these public meetings you can go to community and voluntary group meetings across south Wandsworth to discuss these proposals. If you would like Wandsworth NHS to present their proposals to your group or team contact the communications team at comms@wpct.nhs.uk or on 020 8812 7605.

The LINk will be working with local groups to make sure that Wandsworth voices are heard – watch this space for more news on this important topic. Get involved at once by listening to Rachel Miles of NHS Wandsworth on Monday night 8th June.

LINks VACANCY - ADULT SERVICES ‘EVIDENCING OUTCOMES’ STEERING GROUP

“Allowed me to feel more control” This is what just one person using home care told us she felt having home care had achieved.

Adult social services wants to be able to hear statements about what has been achieved from everyone using social care! And we have a group working on this.

We are looking for someone who uses Adult Social Care Services to join the group as a representative of the LINk. The group meets monthly in office hours either morning or afternoon (is flexible), usually for 2 hours. This is involvement for which Adult Social Services will offer payment at £7.50/hour (as well as reimbursement of expenses).

Contact Simonne Reid at simonne@wandcareall.org.uk or on 020 8696 1709.

If you are a LINk member, you are invited to attend and report back on meetings and activities you attend wearing a LINk hat. Currently we have invitations for a couple of opportunities to do that. The first is a chance to join the Patient Information Group at St Georges Hospital with a first meeting on 9 June at 2pm and the Long Term Conditions Steering group (NHS Wandsworth).

If you are interested please contact the LINks office to hear more about what is involved via ‘Contact Us’  at the top of the page.

Externalisation in Wandsworth – what’s that?

Another opportunity to make your voice heard is offered by changes in the way NHS services are provided to you. We mentioned these changes in two 22nd April news items: the first featuring the PECMAN report back and the second giving the full list of provider services. These new arrangements are now being called ‘Externalisation in Wandsworth’. This is all about the new ways that services currently provided by NHS Wandsworth will be offered in future.

NHS Wandsworth would like to invite you to participate in a WANDSWORTH PROVIDER SERVICES EXTERNALISATION WORKSHOP  being held on Tuesday 23^rd June 2009 at 12.30 – 5.00pm in Battersea Arts Centre, Lavender Hill, London, SW11 5TN.

This workshop will

• Explain the favoured options identified by the Board and outline the scope and limitations of each.
• Help you consider the implications for Wandsworth of these models by presentation of examples of these from elsewhere (case histories)
• Enable discussion and analysis of the likely outcome of implementation of each.

If you would like to sign up to this please let Colin Smith at NHS Wandsworth know as well as the LINks office.

Colin is the Public and Patient Involvement Manager at NHS Wandsworth and you can reach him at

Wandsworth Teaching Primary Care Trust
3rd Floor
Wimbledon Bridge House
Hartfield Road
London SW19 3RU

or by phone 0208 812 7743 or email at Colin.Smith@wpct.nhs.uk

Trusting the NHS to handle your information

How many people do you want or trust to see your medical records? The latest report from the PEC meeting on 19 May discusses the best way to make the public trust the NHS as a good handler of confidential data with a programme of gradual introduction where the benefits of sharing this information are clearest such as urgent care in A&E or specialist and community nursing.

Understandable Score Cards

The PCT has for the first time rated the performance of all primary care practices in Wandsworth against a range of indicators. These will be designed to be understood and used by patients and public to help them for example make a choice of GP practice if they are moving to the area or wanting to move practice. A customer-friendly version of the comparative table will be published and publicised later this year.

Other Topics

• How to make better use of Health Visitors
• South Wandsworth Consultation
• Chlamydia Screening

Andrew Craig’s report representing as ever his views only and not those of the PEC or the NHS Wandsworth can be seen on our site here. The papers of the actual meeting can be seen on the Wandsworth NHS website

Newsletter 13 from the LINks Exchange picks up on the Government response to the reports it commissioned after the failures of care in the Mid Staffordshire NHS Foundation Trust. The newsletter says
“The Government has promised to give extra support to LINks across the country including guidance for the pubic on ‘how to be heard’. There are also plans for a national publicity campaign to promote awareness of the role of LINks in influencing local decision making around NHS services.

NHS organisations are expected to publicly demonstrate that they are putting patients and the public at the heart of designing the services in their areas.

As a result, the Government will, “require relevant NHS organisations to publish a new annual statement of involvement to demonstrate how they are implementing the legal duty to involve patients and the public that came into law in November last year. We would expect the statement to include a commentary by the relevant local organisations that represent patients and the public, including the LINk and the Local Authority’s Overview and Scrutiny Committee.

“For acute providers, in producing their quality accounts, we would expect them to draw data from a range of sources, including direct patient feedback. We also want to ensure LINks are able to comment on quality accounts by requiring providers to consult them on their draft reports, as well as encouraging an ongoing, year round dialogue about the quality of care.”

There is also a reminder about the NCI Summer Conference on 2nd July in London to discuss the future of PPI and two blogs from different LINks on their experience of the first year. On the LINk forums, the discussion about CRB checks is still the leader with 46 posts on this topic.

Finally there are two more LINk Guides published – 18 and 19
Guide 18 is about the health and social care structures and organisations that LINks have to work with and Guide19 is addressed to health and social care managers and talks about how they should work with LINks to the benefit of their users.

Jenny Weinstein is the Executive Committee member who will be putting in the LINk comments on this new policy. She would like to hear from you this week so that the LINk views can be made in time for the Council’s Adult Care Services Overview and Scrutiny Committee meeting in June. The deadline for comments has been extended beyond the Council’s original cut-off date of May 5th.

You can see the Council’s paper here

Your comments will reach Jenny if you send them to the LINk offices or leave them as a comment on this post

Email:
enquiries@wandsworthlink.org.uk

Telephone: 020 8696 1709

Or write to us at:

Wandsworth Care Alliance (The LINk Host)
2nd Floor Bedford House
215 Balham High Road
London SW17 7BQ