A place to build strength

‘A place to build strength’ Reflections on Day Services in the Wigan Borough by the people who use them...

Introduction This document has been drawn together - at great speed - from a wide variety of sources and through the direct collaboration of mental health service users and carers. It is a response to what we feel strongly to be the totally inadequate and rushed ‘consultation’ on the modernisation of mental health day services offered by Wigan MBC Adult Services.

We believe that this consultation is seriously flawed and does not adhere to Wigan MBC best practice and Government legislation 1 regarding meaningful consultation.

Anyone for change?

Does this mean that we are opposed to service modernisation? No. Like most people we don’t really like change, but we understand and support the need for services to be designed to provide as much opportunity as possible for mental health service users to feel socially included. We are all on our own journey of recovery and there is always potential within self directed support to improve support to some service users and increase choice of services. Day Services will also need to respond to the challenge of personalisation, and provide value for money at a time of pressure on resources.

The closure of Day Centres without proper consideration of the benefits to users of these services, and the current and future provision of community services, actually reduces choice and increases social isolation. Social inclusion requires more high value services, not less. Change in itself has to be properly managed to avoid negative impact on service users and their families.

‘Policymakers need to look more carefully at how the wide range of mental health service users can be fully involved in the development and reform of day support; how such provision can provide opportunities for safe space, social interaction and professional support, as well as offering a springboard for valued occupation, collective activities and the development of new personal relationships and networks in the mainstream.’2

1

Part 7 section 138 of the Local Government and Public Involvement in Health (LGPIH) Act 2007

2

Peter Beresford and Wendy Bryant. ‘Saving the day centre’ The Guardian, Wednesday 11 June 2008

2

Managing change We firmly believe that any planned change has to have a significant built-in transitional phase to allow individuals (and communities) to develop an understanding, relationship and trust in those changes - be they apparently small or truly ‘life-changing’. ‘A successful change process takes time, almost inevitably longer than anticipated, and communication is a key element of successful implementation. New initiatives need time to settle within organisations and cannot be implemented through just one person, requiring teamwork and long term senior management commitment to fully reap the benefits’.3 This consultation began on the basis of existing day service closures, contract negotiation and management outside the knowledge (and influence) of service-users and carers leading to many people only awakening to further closure threats and the ‘promise’ of a brave new world in the very near future. This new world has almost arrived, and as yet we are no further along the road to understanding what we will find there. The need for stability and community has often been misunderstood by service commissioners as a dependency. This form of ‘dependency’ is the bedrock of change, a positive strength that must not be eroded or swept away for short term savings or policy demands. ‘Services should be designed around the needs of individuals, ensuring appropriate, effective transition between services when necessary, without age-based, professional or organisational barriers and attitudes getting in the way...’ 4

Our approach in this document is to: 1. Outline some of the benefits of the services at day centres and the consequences of closure.

2. Outline specific concerns from both the service users and carers’ perspectives about the effects of service changes, and the impact of them for the community in general.

3. Outline our own proposals, as part of an honest and open consultation.

3

Redesigning mental health day services. A modernisation toolkit for London. (Mental Health Foundation / DoH. September 2005) p37 4

No health without mental health. A cross-government mental health outcomes strategy for people of all ages. (DoH February 2011) p4

3

1. The Benefits of existing (and recently lost) provision There has been much written and apparently discussed about mental health day centre provision without taking account the views of people who use those services. Service users who access day services do so for a number of reasons:

1. They want to use services which they can access regularly and which provide continuity and structure to their lives, which help them to function more independently in society.

2. Buildings are a focus for service user engagement and provide a sense of security and safety where they can build up their confidence.

3. Service users have relationships and support from other users and staff, built on trust, which re-enforces their engagement and adds value to the service.

4. The services provided are sensitive to the needs of those with enduring mental illness. They provide options for ‘recovery’, perhaps into voluntary service or work.

5. Service users want a variety and choice of service which changes as their needs change without having to access these services in multiple locations, through complex access procedures or through a faceless multipoint access.

4

What do the centres provide?

1. The centres provide services which are flexible allowing service users to change activities to suit how they feel.

2. The activities allow service users to develop a range of skills and abilities which help their independence in the community. Many activities take place in the community or lead to such activity in the future.

3. The centre staff provide continuity as service users are referred to other services.

4. The centres can provide access for community groups which help provide linkages for service users to community facilities.

We are convinced that the Centres contribute positively to the health and well-being of service users and carers. Professionals show their support because if clients are attending a centre, they know this will help their condition.

The Day Centres have provided services that have met many peoples’ needs for many years, and these services have developed as mental health services have developed. There is no suggestion that the services are other than well delivered. The issue is how to provide a balance of effective day services and personalised services provided through self directed support at a time when budgets are reducing. It is clear that the intention is to close Day Centre’s (as has already been done with three centres) rather than attempt this balance, thereby removing important choices for clients. Importantly though, commissioners did identify ‘concerns’ back in 2007 that the overall focus of the services needed attention. However, there appears to have been no active attempt to address such concerns over that time, nor was there any effective mental health strategy developed - not

5

a very good example of ‘World Class’ Commissioning. We believe that these four years have been wasted and could have been better used to develop effective (and cost-effective) services in a more gradual and acceptable way, through consultation and joint-working with partners, providers and service users. The result of this neglect has led (in part) to this current ‘end of contract scramble’ and ‘Hobson’s Choice’ for service users and carers.

We do not feel that we should have to accept the consequences for this mismanagement.

Hello, my name is MW and I am but one of the member of the Wigan Day Centre in the Coops Building.

I understand that you are all concerned about us withdrawing from the public.

I was hurt to learn that the day centre will be closing down. We have a camera group that goes out into the public on Mondays, we also have a bowling club every Wednesday.

What makes the Day Centre special to us is the stability of the structure of the day centre. Each one of us have similar problems but are at different levels. It feels like you are trying to force us to interact with strangers at the same time, however, we are at different stages. When I first started to go to the day centre I was shy, but with the help I have been given I am closer to being able to communicate and interact with the public. A lot of us are scared about the thought of being herded like cattle. In the day centre we have choices to participate in an activity or not, we get freedom to choose, there is no pressure.

6

2. Specific concerns Carers We know that carers value the services provided at the Centres. Many carers are elderly and caring is a very demanding and challenging role which is often forgotten or not fully recognised. Indirectly, the Centres provide much needed support to carers by allowing them some respite from caring with the reassurance of knowing that the people they care for are in a safe and supportive environment. Carers see first hand how attendance at a centre can help to improve the quality of life and health of the person they care for. Carers are thus concerned how continuity of care (for service user and carer) be provided without the support of centres? Effective communication between agencies may also be lost without the benefits of established relationships with clients and carers.

Dear Gill, I feel I must write to comment about the impending closure of Making Space.

As you know I am the husband of one of your service users, D.D. D was discharged from Leigh Mental Health facility after a three month stay in June 2008. Although a lot better than when admitted and taking the appropriate medicine for her Bi-Polar disorder, she was still poorly.

In short, she had lost all her confidence and was functioning on a very basic level – couldn’t be bothered to dress and look after herself let alone function properly as a wife and a mother and more importantly see any pleasure in any aspect of her life. Due to the excellent support from staff at Boston House, she was supported and encouraged to attend ‘Buddies’ workshop. This built up her self-confidence to travel to Wigan by bus and eventually drive again. She then started attending Making Space which is where I believe her recovery took on an accelerated pace.

7

...continued from previous page...

She realised she was not alone ref. Her condition and indeed was in a better situation than many others. She started to become a lot more confident and felt she had some real purpose in her daily life. The support that you and the other staff gave her was tremendous and at times challenging (what D needs).

It got to the stage where she felt confident enough to make the transition from sedentary service user to someone who could make a valuable contribution to the centre – teaching others to cook, go shopping etc.

With support from yourselves she is now undertaking an NVQ2 in Social Care while volunteering at Making Space on Thursday and Friday – something that would have been unthinkable a couple of years ago. I honestly believe without the Making Space facility D would not be where she is today.

I fear that she would have regressed to the state she was in before her admission to Leigh.

Everyone needs a purpose in life and something to get out of bed for, a chance to meet with others in a safe, coaching environment; Making Space provides this.

I am genuinely concerned that if your facility closes then the vulnerable mentally ill will have a much reduced chance of leading fulfilling lives. I am particularly concerned for those who have little or no family support. I also believe there will be more pressures on facilities like Leigh Hospital with some people being continually admitted and discharge, more work or stretched resources at places like Boston House and without being over dramatic an increased burden on the NHS with some despairing people harming themselves or worse.

Please feel free to share this with whoever you wish.

Best wishes, G.D.

8

Personalisation We have yet to see the evidence that community services are better provided. Closing centres will remove valuable resources for all potential users of Personal Budgets. A Personal Budget may provide a service user (and effectively, a carer) with a few hours per week of time of bought services rather than the free access of time to suit their needs provided currently.

Personalisation will also raise its own set of concerns regarding the provision of brokerage whilst avoiding accountability and bias in service provision. Additionally, there is concern that services would be skewed and exclude those service users not able to access such a personal budget.

Personal budgets will not be suitable for a high proportion of clients who currently use Day Centres. Even with effective Brokerage services in place (yet to be achieved), many clients will not be able to cope with the process and its demands and more pressure will fall on carers to support service users who drop out of services altogether, or attempt to use personal budgets.

Advocacy We all need access to an advocate at times. But for mental health service users in Wigan facing upheavals in Day Service provision and the implementation of the personalisation programme the need for ‘distinct and thriving advocacy services at a local level’ is compelling. In Wigan however, we are faced with the loss of the only dedicated mental health advocate available to non-qualifying service users. This could lead to a situation in which a service user subject to the mental health act in the community (Community Treatment Order or CTO) would have access to (statutory) Independent Mental Health Advocacy, whilst an other non-qualifying individual based in the community would have no advocacy provision at all. Similar problems could arise in a hospital setting depending upon the contract and availability of the IMHA. We also have concerns that the very role of advocacy in mental health (outside the statutory provision) will be watered down and burdened with other specific functions, such as personalisation brokerage. We are clear in that the provision of robust and

9

independent advocacy must be carried out without such a burden. Indeed, in the Department of Health Publication ‘Putting People First Personalisation Toolkit: Good Practice in Support Planning and Brokerage’ (pp16-17) this point is clearly supported: ‘In a recent paper written by the Disability Rights Commission21, a clear definition of advocacy is provided:

“Advocacy can be defined as an individual being supported to express views, communicate choices and receive services or participation as a result. It promotes social inclusion and equality”.

In a similar way to brokerage not always being carried out by people with the title of brokers, the task of advocating is not always carried out by an advocate. Using the DRC’s definition, it would be hard to argue that advocacy does not fall within a function of brokerage. However, brokerage does not replace advocacy and there is still a clear need for distinct and thriving advocacy services at a local level. In nearly every brokerage situation we have seen there has been an element of advocacy within it.

However, there is an important distinction between the role of an advocate and broker – most often a broker will be involved in the implementation of the outcome of the advocacy in some way, whilst the advocate may not.’

10

Mental Health Strategy

THIS PAGE HAS BEEN LEFT INTENTIONALLY BLANK, Feel free to doodle!

11

Reducing social exclusion through employment?

Social inclusion is not just about work opportunities. It is about creating a better quality of life that is taken for granted by most adults. Even when appropriate and suitable, meaningful work opportunities are few and far between these days. Day Centres and supported community engagement help to create a meaningful life and community that can be safe, stable and sustaining. Until such time that suitable job opportunities exist (and society in general is a more accepting place) Day Centres can provide a venue and springboard for opportunity.

Are you listening?

The ‘Listening Event’ organised by Health & Care Together - Wigan Borough Local Involvement Network (LINk) ‘When is our voice going to be enough?’ took place in November 2010 with over 100 service users and carers attending. Amongst the 10 ‘Recommendations for Wigan Council’ listed at the end of the document produced from that day were: ‘To ensure that service users were fully consulted on major service changes.

Consultation should be planned as far in advance as possible and service users made aware of alternatives to be considered.’

‘To consider that service users are enabled to fully participate in any consultation regarding service changes, particularly those in hospital or those not able to attend ‘listening events’ and meetings.’

‘Ensure that families and carers of those attending day centres are fully consulted on proposed service changes.’

‘Consider that contracts with service providers are not terminated before changes have been consulted on with service users. Day centre service providers have been given notice to close day centre provision on March 31st 2011, (with an extension to end June 2011 to propose an alternative model) yet service users are being invited to ‘Listening Events’ on the 17th January and 7th February 2011 when the majority of

12

service users have expressed their concerns about how the closure of the day centres will impact on their mental health and do not wish them to close.’

‘Ensure that Equality Impact Assessments on the closure of the day centres are carried out.’

‘It is recommended that social care commissioners are more open and transparent about plans to change services and that they personally engage more with service users.’

The ‘listening events’ run by Wigan Council which began the consultation on the modernisation of day services took place at Wigan Cricket Club (17th January) and Leigh Library (7th February). The resultant report (in draft form at the date of this document) reflected concerns and the confusion over the consultation and the need to restore services already targeted and closed. The responses also reflected the stagnation and neglect of local community focussed activities and services over several years. There was a real desire to maintain (and revive) the bricks-and-mortar centre local to them from which a community - often seen as harsh and unforgiving - could be accessed when and where appropriate. The sense here was a pattern of a self-regulated inclusion, rather than selfimposed exclusion, service users being realistic in their aspirations given the level of community understanding and development. Having an effective community such as this - providing a good menu of activities and opportunities for further inclusion - provided confidence to act in the knowledge that there was a ‘home-from-home‘ where understanding doesn’t have to depend upon an appointment once a week.

Overall, the ‘listening events’ should have been part of a regular pattern of feedback into more formal user (and carer) focussed planning events rather than the biggest part of a short consultation set to change community services for the whole of the Borough. In fact, some service users were critical of the way that they had been prompted in the feedback sessions at the two events. There was some agreement that the second session (in Leigh) was a marginal improvement from the first, prompting us to suggest that this kind of consultation was a new experience for Adult Services, but not one that should be road tested when such an important decision was resting upon it.

13

At the time this document is being written we do not have access to the questions asked and subsequent results of the hospital based survey being conducted as part of this consultation.

To Whom It May Concern I have been involved with Making Space for the last 18 months, attending and getting into the sessions run at the day centre, I have been able to help others with some existing skills, the best being running the gardening club. Making Space also run a therapeutic workshop called ‘Buddies’ which I also attend a few days a week. In this time my anxiety had become less severe and my confidence has improved and I have met people who suffer the same problems as I do. Since I found out that the workshop and the day centre are closing my anxiety has increased as a result my medication has been put to a higher dose. At present I am worried about the future and what is going to happen.

Part of my condition is agoraphobia and cannot travel too far from home. So a lot of the new sessions I would be able to attend as they would be outside my comfort zone. I worry that I and other people in the same position will become isolated again.

I understand things need to change in these difficult times, but I hope you consider a quality alternative service to help people with mental issues and not just the cheapest option an example being stuck above a cafe in a dingy room with no heating. This has happened with other organisations in the area. We are people with healthy needs and the services provided are often better than any tablets. You would not take a physically ill person’s medication off them if its improving their quality of life so why do it with people with mental health disorders.

14

3. Summary and Recommendations In summary, we believe that rather than cutting existing Day Services completely, the Wigan MBC Adult Services and its partners should:

1. Reopen the services already closed and make a commitment to further extend existing services in order to...

2. ....consider alternative ways of achieving its aims by building on strengths, minimising weaknesses, and improving value and choice. We have highlighted the importance of fully understanding the benefits that service users and carers get from the use of Day Services. Carers have very real concerns since they will have additional pressures placed on them in supporting adults with enduring mental illness who may deteriorate when services are removed. There are also major concerns about the ability of the ‘personalisation agenda’ to deliver the range of services that are needed - even for those qualifying service users. We believe that the proposals made thus far have serious flaws despite good intentions which we would applaud if they were not hidden by the obvious wish to cut the costs of Day Care at all costs. ‘There are many interdependencies between physical and mental health, so any efficiencies in mental health services need to be carefully thought through so that false economies and greater costs elsewhere in the health and social care system are avoided.’5.

3. Users of services, family and friends, staff, commissioners and service providers, should be brought together to agree the principles for service procurement and delivery. This could be done by...

5

No health without mental health. A cross-government mental health outcomes strategy for people of all ages. (DoH February 2011) p64

15

4. ...ensuring that any consultation and involvement is timely, meaningful and ongoing. This is also vital to facilitate good communication and a development of healthy user-led organisations.

5. Finally, ‘there is still a clear need for distinct and thriving advocacy services at a local level.’

We hope that our views will receive serious consideration and we will continue to take steps to ensure that these views are widely known within the health and social care agencies and all other interested parties.

16

More letters and poems from service users and carers: Letter to the Editor and people of Wigan I attend a centre named Making Space at Coops Dorning Street in Wigan for people who suffer with physical and mental health problems, 3 weeks ago we were informed that the centres in Wigan and Leigh are to be closed on the 31st March, 2011, the centres at Ashton, Worsley Hall and Tunstall House have already closed, the Wigan and Leigh centres are well attended by patients and they give carers a welcome break. The people speak to the staff who are very helpful at listening and helping us with our problems. As soon as I found out about the impending closures I informed my Doctor at Beech Hill Medical Centre, he had no knowledge of the centres closing. He said he would try to find out more information about it. But, in the meantime, I have phoned Boston House and they have had no notification of the centres closing. It is only a few weeks ago that a new centre for carers opened in Hindley but when given some thought a new centre has opened for carers but both Wigan and Leigh centres are closing for patients so where are the patients going to go while the carers are attending the new Hindley centre.

Surely this doesn’t sound appropriate and is putting patients who are mentally and physically disabled at risk because of course there would be no-one caring for them. Speaking for myself, and other patients that attend the centres, we will go back to being suicidal, walking the streets day and night, going to Doctors more and taking up their time. The centres have been opened for these troubled people to have somewhere to go to talk and meet other people with similar problems then they don’t feel too isolated, they know that they have somewhere to go in times of crisis. The staff and patients at Making Space in Wigan would welcome a meeting to discuss a way round the closure with whoever is in authority that make these decisions. We would also like to ask Lisa Nandy, MP for Wigan, and Andy Burnham, MP for Leigh, if they could offer their support in saving the centres from being closed and if they could also be involved in a meeting.

There are councillors that don’t even know where Making Space is and of its valuable service it gives for Mentally and Physically disabled people. I would just like to ask if all councillors would please think about all the vulnerable people and even people in their own constituencies that the closures would affect and give us your full support and stop the centres from being closed down.

17

At present there are 4,000 carers registered with their Doctors and it is estimated that there are 26,000 that are not registered. We would like to ask the people of Wigan, Leigh and surrounding districts for their support before the closing date of 31st March, 2011 in any way they can because we do need your help now. Could I also take this opportunity of thanking people who have supported us in the past and for taking the time to read my letter.

Mr G Bennett

What’s going on Now I’m cast aside Thrown into a foaming sea That envelops me I’m drowning in misery.

No-one hears my screams, Like driftwood, I’m surplus to my needs.

I shout, I scream No-one sees my tears fall Or hears my words that echo Off those doors Which are closed

By P.

18

Coming to Coops Day Centre helps get me out of the house, and meeting people, who have similar issues to me and understand if I am having a bad day.

I have made a lot of friends and when the centre closes I worry that I will lose touch with people, which will impact on my mental health and I will become isolated again.

I enjoy coming and join in with the craft/sewing session when I feel well enough. The staff are really nice and helpful, and you know that they are always available to talk to you on a one-to-one basis when you are struggling. I get a lot of pleasure out of coming to the day centre and it gives me a reason to get out of bed in the mornings.

E. Dear Sir, My name is S.G. and I regularly attend Making Space in Wigan. I have been in attendance for approximately 2 years. Without their help I would still be struggling with depression and confidence issues.

We were told before Christmas that there would be funding for us, but recently a member of the council came down and said that wasn’t the case anymore. Not only that, but they have shortened the time for us to launch an appeal.

Without the help of Making Space and their dedicated staff, countless hundreds of vulnerable people just like myself would not have benefited and been given the confidence to move forward with their lives. Also, who’s going to help the ones that will come after us? Who has got the right to prevent them from getting the help that they are entitled to?

If you could spare the time, sir, would you please look into this situation for us please? We are just mere small people with small voices, we need someone like yourself to champion our cause. They won’t be able to fob you off as they do us.

Thank you for taking the time to read my letter. Please sir, do what you can for us and help save this service that is so vital to our community.

Yours sincerely, SG

19

Keith the Computer Man Knowledge personified, he’s one clever guy.

Everyone’s welcome, no need to be shy.

Inspiring, informative, he’s all of these, Teaching you things with comparative ease, His aim in life a desire to please.

The doors always open, so just walk in.

He won’t scream or shout, so just begin, Ending the fears that hold you back.

Chance to get life back on track.

Only you can make that choice.

Make people listen to your voice.

Patience is Keith’s middle name, Understanding and funny, he won’t blame, Times when you may just sit in tears, Endless doubts, overwhelming fears.

Respect and empathy are just some of his strengths.

Motivating, he’ll go to any lengths.

A man for all seasons, so give it a go.

New beginnings, new hope, let your skills show.

20

I like going to Leigh Day Centre on Fridays because I do cooking. On Mondays I like going out with the photography group from Coops Day Centre, I’ve been to Bolton and Liverpool on the train and buses.

S.

“I feel very much that at the moment Making Space does fill in the ‘niche’ in my ongoing health progress that I need, for example, with my involvement in some of the weekly activities that they run, and also with some of their interaction with some of the other people who attend.”

AU – ‘A quote or statement – Wigan Day Centre’s Meeting’.

Life before Coops came along was full of gloom and doom. I was in and out of hospital lots of times, then I came across Coops then life changed for me. Things were looking up, I met new friends. I now volunteer and do work with the OAP’s and men and women with Alzheimer’s which I enjoy very much, it take three days up. The rest of the time I go to Coops. I do not know what I will do if Coops closes, I will lose contact with all my friends I have made over the years.

B.

Making Space for me is a day centre that I attend 3 or 4 times a week. Sometimes I have a break, but it has helped me to overcome shyness, confidence and where I would sit and not speak to anyone in the centre or in the community. I still lack some confidence.

I have a mental illness since I was a teenager and in my 20’s sometimes I was cutting myself, but slowly it has reduced sine I have been attending the day centre at Coops in Wigan.

A service user.

21

Mental health is an illness you can’t see The illness lives within me They stop and stare, but they Don’t say hello in there.

I walk the streets with my head held high I give a big sigh and wonder shy Why the man in street said Get it off my feet I drink all day and all night To calm my nerves Oh what a horrible sight The demon drink lives within me The drink takes my body you see It is not a happy tonic you see It rots your liver and also your brain It is enough to drive you insane

22

A Daycentre Is: A place to laugh and sometimes cry.

A place to seek solace when hope seems to die.

A place to build strength and to start anew.

A place where the others feel just like you.

A place to come when sinking fast.

A place to help vanquish your pain from the past.

A place you can talk to people who care.

A place full of kindness as they’ve been there.

A place that says ‘you’re welcome here’.

A place to feel certain that no-one will jeer.

A place to help rid your feelings of shame.

A place that helps teach you you’re not to blame.

A place to save it fills a niche.

A place if left without all our hopes would cease.

A place I’m grateful it was there for me A place you too one day may need to be.

Janice Simpson - service user

23

Initial distribution list Dr Kate Ardern Executive Director of Public Health for the Borough of Wigan Councillor N D Ash (Chairman) Adult Health and Wellbeing Scrutiny Committee, Wigan Council Simon Barber Chief Executive, 5 Boroughs Partnership NHS Foundation Trust Andy Burnham M.P. Leigh Constituency Yvonne Fovargue M.P. Makerfield Constituency Sally Hobbs Head of Service Strategy and Commissioning, Wigan Council Lisa Nandy M.P. Wigan Constituency Joyce Redfearn Chief Executive, Wigan Council Councillor D T Molyneux Deputy Leader of Wigan Council Nick Yates Senior Local Engagement Officer, Mind Wigan Borough LINk Glenys Shepherd, Chair Making Space Richmond Fellowship

24

As seen on Sky News: 26th March 2011...

25