Patient and Public Engagement

Wandsworth Borough Council & DisabledGo invite you to join them at the Steering Group Meeting

on Tuesday 9th March,   2.30- 3.30 p.m at Wandsworth Town Hall, Wandsworth High Street

Wandsworth, SW18 2PU.

About DisabledGo

DisabledGo has been working in partnership with the Wandsworth Borough Council since 2004 to produce an online access guide to Wandsworth

So that the DisabledGo-Wandsworth guide develops in the way that local people want it to, we invite you to the steering group to give us feedback on the following:

- New venues that you would like to see added

- The new DisabledGo website

- Online steering groups

RSVP INFORMATION

Please RSVP using the attached reply slip as soon as possible with any specific requirements you may have to:

Tom Felton, DisabledGo, Ardent House, Gates Way, Stevenage, SG1 3HG.

    E: tom.felton@disabledgo.com 

    Tel: 01438 842710 

     Fax: 01438 842717

If you know of anyone who may be interested in hearing more about the service we provide, or would like to attend the meeting please do not hesitate in forwarding this information on

LINks Exchange Newsletter Issue 17

There are three main topics in the latest issue

Campaign

The Department of Health has launched a campaign to ‘promote the meaning and merits of LINks – among the whole community and among health and social care care professionals. with the ultimate aim of encouraging engagement and participation in your LINk’ The Department is using a social PR company – Forster – who will be coming out to LINks to work with them on this.

Last change to have your say on Quality Accounts

In High Quality Care for All, Lord Darzi said publishing quality performance would help patients and their carers make better informed choices about health care and allow clinical teams to benchmark, compare and improve their performance.

High Quality Care for All proposed that all providers of NHS care should produce Quality Accounts to provide the public with information on the quality of care they provide. The Department of Health has introduced legislation to require the publication of Quality Accounts from April 2010. Designing the format and content of Quality Accounts, is being facilitated by the DH, and steered by stakeholders, including the regulators, NHS management, clinicians, professional organisations, patient groups and the public.

The lessons learnt in a pilot from producing Quality Reports , alongside those from the Quality Accounts engagement process, are being used to develop the detailed guidance that the Department of Health aims to publish in early 2010, following a consultation on the proposed content of Quality Accounts over the autumn 2009. This process will also inform the Care Quality Commission and Monitor in their approach to developing the regulatory system for healthcare.

In September the Department of Health launched a consultation which you can find here.

The consultation closes on Thursday 10th December.

Indemnity Update

A number of LINks have asked about this topic and whether LINks are covered by a indemnity policy set up by the Secretary of State. Some LINks have concerns that an authorised representative making a report following a visit might be reluctant to make a candid and honest report in case the business owner makes a claim for defamation against them personally.

The answer is no – it is up to the local authority – Wandsworth in our case. If you feel that you might need such a policy, you can see the advice on the LINks Exchange website and take it up with the LINks office.

NHS Wandsworth is currently reviewing Adult Community Nursing Services, including District Nursing, Community Matrons and Specialist Nursing Services (Diabetes Nurses, Heart Failure Nurses, Leg Ulcer Nurses, and Respiratory Nurses)

If you have received any of these services or are a carer of someone who has received these services, NHS Wandsworth would like to hear from you!

Please take the time to complete this short questionnaire and return it to NHS Wandsworth (not the LINk office).

• View the Service User Survey, July 2009 (opens in Microsoft Word, 127Kb)
  (Either click the link above, or right click and select ‘Save As’ to save it on your computer)
• or view the survey in PDF format

Please return completed surveys by Friday 28th August to:

Suzanne Lawler
Long Term Conditions Commissioning Manager

By email: suzanne.lawler@wpct.nhs.uk
By post:

Wandsworth PCT HQ
3rd Floor, Wimbledon Bridge House
Hartfield Road
London
SW19 3RU

Queen Mary’s Hospital in Roehampton are looking for a volunteer to take part in their regular inspections.

Join PEAG and do PEATs

These inspections are called Patient Environment Action Team (PEAT) inspections and assess a range of factors including standards of maintenance, décor, furnishings and cleanliness to help bring about improvements to the patient environment.

Queen Mary’s carries out 3 “mini-PEAT” inspections and one PEAT inspection every year through a group called the Patient Environment Action Group (PEAG). The PEAG meets every 3 months, and volunteers will be expected to take part in each meeting and inspection (i.e. 8 sessions per year).

The hospital is looking for volunteers who have a keen interest in the patient environment and experience, and are able to report back to the LINk (verbally and in writing). They will cover all expenses that you incur when taking part in this role and can provide additional support in the form of basic training (giving background on PEAT inspections).

The deadline for submission is the 4th August, applicants to supply a short personal statement (no more than 200 words).

Please note if there is an insufficient response, they will defer an appointment until October so there will be another chance to get involved.

If you are interested in this opportunity please contact Tom Magill on 0208 812 7642 or Tom.Magill@wpct.nhs.uk.

Some totally timely topics in the latest issue of the report from the PEC/ NHS Wandsworth Management Team meeting (link opens in PDF). This is personal feedback from Andrew Craig in his role as the Lay Member  on the PEC.

Cancer Prevention and Early Detection Plan

Local data shows a clear link between deprivation and cancer mortality with the more deprived Wandsworth wards (Latchmere, Queenstown, Northcote) having higher rates than the rest of London. The action plan covers

• Smoking cessation
• Obesity control
• Increasing physical activity
• Alcohol reduction
• Cancer screening
• Raising awareness
• Sun protection and early detection of skin cancer
• HPV vaccination

More work is needed with users of cancer services and those who were identified as being at risk. To be successful, these programmes, Andrew argues, must be engaged with users – for example finding out what young people in particular know and understand about skin cancer risks.

Swine Flu and the provision of antiviral drugs in Wandsworth

Swine flu seems to have well and truly arrived in Wandsworth and the PEC queried why drugs like Tamiflu could not be obtained from ordinary chemists rather than two designated health centres and one chemist in Tooting? If things get worse, the PEC wants to see these drugs available in all pharmacies in normal hours as well as a convenient out of hours service.

Money

NHS Wandsworth (NHSW) has a surplus at the moment of £6.3million. This gives NSHW some financial headroom to plan for the future. But government rules mean that any surplus has to be spent and not used to help out in a future with less money. So a deficit looks likely after 2011/12 and people will have to use the money they do get more efficiently. The NHSW board is discussing the future strategy needed to cope at their meeting on 29th July.

Other Business

The committee considered a report on user and patient engagement in the groupings of GP practices known as clusters where the situation is very mixed. A reminder was needed that involving patients was not an end in itself – there needed to be a purpose and some results.

NICE Work on Lower Back Pain

NICE is the body that issues advice on how best to treat people and a recent May publication gave guidance on lower back pain. The PCT has to act on such guidance and provide the services that do seem to work and decommission those that do not. The clinical effectiveness group will look at the NICE guidance and advise the PCT on what it needs to do.

For a copy of the full report of the meeting, go to the NHS Wandsworth website featuring Board Reports. All the PEC Lay Member reports can be found on the Resources menu under Health & Social Care.

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.