For Carers / About Carers

Following the launch of the new Carers Strategy we are inviting Carers to join a group to work with services to support its delivery, putting their voice at the centre of the work. As a member of the group you will have an active role in making sure Carers views and needs are included at every stage of its development.

What is the ‘Carers Strategy Group’:

• Responsible for the delivery of the Carers Strategy
• Carers can positively challenge the work of local services
• Carers can ensure that services deliver what was promised
• Staff involved include Wandsworth Council, Social services, Mental Health Trust, NHS Wandsworth and Voluntary Sector Organisations

How do I find out more?

Contact Daniel at the Carers Centre on 020 8675 0811 before 14th December

You will receive full training as well as ongoing support from Carers Centre staff.

Please note this group is specifically for unpaid carers.

The Wandsworth Carers Conference – for those who look after an adult in Wandsworth and are not paid for the care they give.

10.30am to 3pm Tuesday 6th October at the Civic Suite Wandsworth High St., SW18 2PU

The LINks will have a stall at this event where Carers are invited to come and have a ’speed date’ with the people responsible for providing support and services for carers in Wandsworth. These senior professionals from the Council, Health and Mental Health Services will be there to answer your questions about the plans they have made for action and improvement in these area.

National Carer in Chief will be there

Dame Philippa Russell Chair of the Government’s Commission for Carers will be there to give the keynote address.

Free lunch, Entertainment and Other Treats

Meet your fellow unpaid carers and don’t forget to come and tell us what we should be saying on your behalf to the bigwigs. No need to ’speed date’ us – we’ll be sticking around.

Wandsworth’s Carers’ Strategy

Back in July we posted an item telling you about the new Carers’ Strategy consultation being undertaken in Wandsworth.

There are some 19,000 carers living in Wandsworth and the new Carers’ Strategy will cover how the statutory and voluntary agencies will help carers over the next 5 years.

At that time, Wandsworth LINk welcomed 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. We fully support of the values and philosophy underpinning the Adult Services User Engagement and Involvement Strategy.

Our Response

We have now published our response to the Strategy and you can see it in the Resources Section of the website as the LINk Response to Consultation on Wandsworth’s Carers’ Strategy (PDF). Our response is based on the content of the Strategy and Action Plan documentation, the views expressed by 25 people who attended the two consultation meetings and anecdotal evidence from carers who have approached LINk. Thank you to all those who contributed.

LINk’s focus is on services for adults so comments are not offered about services to children and young people.

LINk recommendations for priority action

Ownership of the Strategy

The strategy is clearly a collaborative project across health and social care agencies. It would be further strengthened if ownership could be extended across all health and care commissioners and providers within the Borough.

Carer Participation

It is appreciated that this strategy was developed with the participation and involvement of carers looking after people from different user groups as well as young carers. Implementation will be strengthened with the development of specific good practice guidelines for involving an even wider range of carers, especially reaching those who need support with financial and practical problems of finding alternative care for their service user in order to participate.

From discussions about the consultation process, it emerged that Wandsworth does not currently have a data base of all carers who have received a carers’ assessment not is there a way of identifying carers via records on service users. It seems that more work could be done to identify and communicate with carers who may be unaware of what is available, even before work is done to identify carers not currently involved with services.

Information

Establish and publicize a multi-lingual help line specifically dedicated to supporting carers with an option for carers to be referred for an individual discussion.

Quality personalized care

Adopt and implement a policy whereby carers are always consulted and listened to

1. in the assessment and review of individual care
2. where services are planned to be changed or closed

Recognition and Respect

Provide carer-led training and involvement in recruitment for relevant professionals to ensure that they fully understand the vital role played by carers as partners in care and their entitlement to be involved and to have a carers’ assessment.

Good Communication

Establish a data base of carers in Wandsworth, inform them of their rights and entitlements and consult them about developments that may affect their lives.

Quality Breaks

Extend and publicize readily accessible affordable high quality respite care, including emergency respite and respite using the Crossroads model.

Health and well being

Extend and publicize counselling, support group and recreational services for carers, including provision at evenings and weekends taking into account the need of carers to find/pay for alternative care for their service user.

Economic well being

Ensure that the Carers’ Help Line can provide relevant benefits advice, debt counseling and information about employment entitlements.

INVOLVED is a new newsletter produced by Wandsworth Council (click here for the latest newsletter – opens in Adobe PDF) looking at patient and public involvement issues and opportunities in Adult Social Care.

It announces the launch of the new Wandsworth Service User and Carer Engagement Strategy (also discussed on our website here) and the setting up of two new groups, one for organisations working in patient involvement and one for service users and carers. Another article describes the new strategy for carers and young carers “Looking after someone and having your own life” which has been developed in consultation with carers themselves. A priority here is to improve how carers’ assessments are experienced in the borough. Finally the newsletter includes a description of the LINk encouraging local people and organisations to become members.

There are some 19,000 carers living in Wandsworth and the new Carers’ Strategy will cover how the statutory and voluntary agencies will help carers over the next 5 years.

Wandsworth Council, NHS Wandsworth and other partner agencies are currently consulting on the draft strategy and plans for Carers – this includes young carers too. Wandsworth LINk has been asked to help gather views, comments and suggestions to help improve the current draft plans.

If you would like to see the draft strategy and action plan (which are being consulted on) they are available by from this website or we will send them to you in the post.

Your Views in Writing, by Phone or by Web Comment

You can reach us to ask for a copy of the plan and give us your views at Wandsworth LINk, 2nd floor, Bedford House, 215 Balham High Road, SW17 7BQ, on 020 8696 1709 or leave a comment after reading this by clicking on the blue comment text at the top of this piece.

Your Views in Person

If you want to give your views in person, come to the one of the two Carers’ Voices discussion being held in August and have a chance to win £30 of shopping vouchers (the draw is after the second meeting) as well meeting other carers over tea.

Tuesday 18th August 11-1pm at Balham Library Hall, 16 Ramsden Road, SW12 8QY

OR

Wednesday 19th August 6-8pm Putney Library Meeting Room, 5/7 Disraeli Road, Putney, SW15 2DR

Call Daniel at the Wandsworth Carers Centre on (020) 8675 0811 to register your place, or find out more.

The Wandsworth LINk is committed to improving the services for Carers in Wandsworth – and in order to achieve this we would like to hear from Wandsworth residents what they think of carers’ services now and what improvements they would like to see in the future.

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.

Please Join Us!

You are invited to a fact finding day organised by the Wandsworth LINk Secondary Health and Social Care sub-group. Attendance is free and lunch is provided.

The Bridge Oakmead Road Balham SW12
10am till 4pm, Thursday 25th June
Over 7 different speakers from Health and Social services

YOUR FULL PROGRAMME FOR THE DAY

• 10.00 am
  Welcome and Introductions – Suzanna Kawalek, Chair of the Secondary Health and Social Care Sub Group
• 10.15 am
  Ernest Johnson, Barnes Hospital
• 10.45 am
  Sarah Lehman and Linda Best, Wandsworth Social Services
• 11.15 am Break
• 11.45 am
  Tom Clarke, Associate Director of Nursing, Springfield Hospital
• 12.15 pm
  Jacqueline Kerkham, Kingston Hospital
• 12.45 – 1.45pm LUNCH
• 2.00 pm
  Jo Jackson, NHS Wandsworth
  Tonia Michaelides, Associate Director, Acute Commissioning Team
• 2.30 pm
  Scott Bennett, Head of Patient Flow and Clinical Site Management, Chelsea and Westminster Hospital Trust
• 3.00 pm Break
• 3.15 pm
  Contributions from User/Patient/Carer representatives with experience of hospital discharge processes
• 3.45 pm
  Final Questions and Close of Day

It would helpful if you could let us know if you are coming so we have an idea of the numbers for lunch. We would delighted to answer any questions you have about the day. Contact the LINk office in the first instance.

Email:
enquiries@wandsworthlink.org.uk

Telephone: 020 8696 1709

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!

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.