About Threads

What is Threads?

Threads is a dual award winning, voluntary service user led project. It reached those heights in two years after work began in November 2003 and did so without professional assistance.

The project was created after the founder learned that many of the problems met by people who used mental health services in Rotherham went unresolved. When people were asked why, they would shrug their shoulders or say they would have to use the service again. The format and regulation of Threads follows the founder’s experience of two mental health groups; one was organised in a way that way that was rewarding and safe, the other in ways that were elitist, confrontational, and repressed difference. The former has left only pleasant memories, the latter the opposite. Threads has tried to keep to the qualities of the first. Though the Threads project has followed the form of a service in the Kirklees area of West Yorkshire we would argue it is more innovative in the way it meets its objectives, and in its present form, is possibly unique. 

The primary purpose is to gather the concerns of people who have a mental illness and pass them on to those best able to resolve. We gather those concerns in ways that suit people who use services. The service is confidential, anonymous, informal and threat-free. We promise that concerns will be heard but, due to anonymity, do not promise a resolution.  Threads see no difference between services provided by the statutory or independent sector or one provided by users or ex-users of mental health services and will publish concerns raised about those services.                 

Threads is seen by people who use mental health services and service providers as a valuable tool in its work as a ‘concern gatherer’, recovery resource, knowledge bringer and intermediary. The project works in partnership with Mental Health Services and can count a number of education resources outside Mental Health partners and supporters. Initially Threads did not offer support; provide advocacy or advice to anyone outside the group. Those intentions changed when Threads began the visits to the wards when it was realised that while most patients need to talk about their concerns there were others who needed assistance to obtain resolution. Threads does not give advice but refers the patient to the most appropriate service.

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What do we do?

Threads follows need and invitation, should a service provided by Threads be no longer required we move to where we are needed.

Partnerships

Threads works closely with five services:

Threads also has a looser relationship with other services: including community learning services, and the Richmond Fellowship.

Visits to the wards

Threads organises fortnightly visits to two Wards in Rotherham's Mental Health Unit, on alternate Sunday and Wednesday afternoons. 'Threads' meets and talks to inpatients making themselves to both patients and staff. Threads does seek patients concerns but does so without being intrusive. The visits are welcomed by patients and staff, the Acute Care service manager has said the visits are changing the relationship between patients and staff, she has also said that the number of official complaints has fallen drastically as a result of the visits. The number of concerns heard by Threads has not risen following that decline. We see the visits as a priority, that comes from the most oft-repeated concern of patents is not having anyone to talk to. It is quite difficult to talk about visiting the wards without appearing condescending. What we have learned is that the benefits are a two way thing and that talking is ‘magic’. A friend and trustee of Threads has said that he could feel the ‘change in the atmosphere’ and a nurse has said that the effects of a Threads visit can be felt two days later.

Visits to the Rehabilitation Wards

These visits came about through an invitation from the Service Manager and began in the Summer of 2007. It was an initiative we had hoped to begin since the visits to the Acute Care Wards were established. While many patients go home when they become well, many still need a lower level of specialist care and use the Rehabilitation Service. Visiting the Rehabilitation wards allows 'Threads' to maintain contact with patients.

The Thursday and Tuesday Groups

They are ‘just in case’ groups and are organised to be a point of focus for people leaving inpatient care and for people who do not wish to attend Day Services and Day Centres. They are support groups with a difference – everyone is welcomed. We particularly welcome carers and workers who accompany a family member, a friend or a patient and meets in a central location that is free from stigma, comfortable and threat-free. The Tuesday Group is a recent addition due to the popularity of the Thursday and is still in its infancy but we are sure it will be a success.

Marbles

Marbles is a relatively new self help and support group with a membership drawn from people using Rotherham’s Early Intervention Service. Threads assisted with the organisation of the group and obtaining funding. Marbles meets on Wednesday afternoons in the 'Threads' workspace.

Staying Out

Staying Out is a group organised by people using the services of Richmond Fellowship. The groups’ aim is helping people stay out of hospital. The group meets fortnightly in the Threads work place.

The Newsletter

The newsletter is seen as the hub of the project. All concerns and issues raised are passed on to those best able to resolve them and are also published in the newsletter to ensure that they are seen. When received we have published responses. While the intended readers of the newsletter are people who use mental health services it was realised that the newsletter and the contents needed to be of value to carers & workers. In that respect we have attempted to achieve a balance that is acceptable to everyone. Threads seeks to include material that is topical and of interest to anyone involved in mental health. That includes personal experiences of services and illness, including those of carers and workers. We also include humour, poetry and paintings, words and images created by people using services. The newsletter is also intended to be challenging and sometimes controversal. That means that we may include material that some people will find offensive. If such cases we will say that we are sorry that people were offended as it was not our intention.

The newsletter is also used to promote practices that are of benefit to people using services. more info...

Direct Payments

Threads was the first service to promote Direct Payments in Rotherham at a time when only one person with problems of poor mental health was receiving the payment. In January 2004 Threads invited a dedicated team from Huddersfield to come to Rotherham to talk about Direct Payments. They came at a time when few health and social workers had heard about the concept and the Local Authority did not promote the concept. Rotherham now leads the UK in the number of people receiving Direct Payments, Threads does not claim the credit for the record. That belongs to the Direct Payments Service manager whose dedication has led to the rapid increase in numbers of people making use of the service.

Wellness Recovery Action Plan

Threads does not claim to be the first to bring the Plan to Rotherham. The credit for that goes to Doncaster & South Humber NHS Healthcare Trust (DaSH). The DaSH Assistant Director for Acute Care Services invited a dedicated team working in Newcastle to come to Rotherham and lead a workshop. ‘Threads’ does claim to be the group that promoted the use of the Plan among people who have a mental illness. Threads members were among the people trained to teach people how to organise a Plan. They have led workshops to inform workers about the Plan.

Service User Involvement with Mental Health Services

Threads has, alone among Mental Health Service User Groups in Rotherham, promoted involvement by a wide, fair and balanced representation of service users on all decision making bodies organised by DaSH. This is a requirement of the NSF and involving a ‘wide selection’ of service users is also among the criteria in the annual assessment of services. Up to the most recent assessment that target had not been reached. For the past few years the same service users, including members from 'Threads', have represented service users at the meetings organised by DaSH to discuss changes and development of mental health services. During 2007 that practice is changing and both DaSH and Rotherham Primary Care Trust are organising regular events to encourage a wider selection of service users to take in discussion around changes and development of services. Threads does claim some credit for the positive changes.

Other promotions

Threads has also promoted Severe Mental Illness Registers, Crisis Resolution and the Prescription Library among others. We have also promoted ‘Copies of Letters to Patients’ and Advance Directives but not with quite the same fervour.

Threads Talks

Threads has been organising workshops on topics applicable to the lives of people who have a mental illness since its work began. The first speakers were Graham Higgins, the Acting Chief Executive Officer of Doncaster & South Humber NHS Healthcare Trust and Chris Martindale, the Senior Mental Health Social Worker. Both spoke about their work, the service and hopes for the future. Since that day a significant cross-section of people providing services have led talks. They include the Chairman of the Trust, Directors and Assistant Directors, Service Managers and workers. The topics have included ( with several being repeated two or more times):

Anxiety Workshops

A workshop most often requested was about anxiety and depression. While there were many staff willing to lead the workshops a major difficulty lay around their availability, their case and work loads and the day and time of the workshops. There were two other difficulties; some staff unable to cross care boundaries and each group presenting their own version.

Threads, while seeking information on the Internet, stumbled upon the ‘Living Life To The Full’ website created by Dr Chris Williams. The site promotes self help through a programme emphasising the Five Areas and their effect on anxiety. A statement on the site noted that the programme was being taught in colleges by lecturers with a rider stating that it could be taught by ‘others’. Threads volunteers saw themselves as ‘others’ and after considerable discussion decided to approach Rotherham Psychology Services for advice. Psychology Services saw benefits in the project and agreed to provide training, and act as assessors and scrutinisers.

Threads devised a two year programme and approached Awards For All asking for funding for the first twelve months. The application was granted. While the options listed in the grant application were achievable that could only happen after a suitable presentation was created. The length of time needed to create a suitable PowerPoint presentation was not built into the timescale. That error threw the training into disarray, and training could not restart until the presentations were in an acceptable form. Much of the summer 2007 was spent in creating presentations that were introductions to a self help programme that participants could take away and work with in their own time and at their own pace.

Piloting the presentations began in September. At this time there are five Powerpoint presentations being piloted across statutory and independent mental health services. They are shortened and adapted versions of two workbooks; Understanding How Anxiety Affects You (Session One, Three & Four) and Understanding Worry And Generalised Anxiety (Sessions Two/a & Two/b);

  1. Session One – understanding how anxiety affects you.
  2. Session Two/a – understanding worry and generalised anxiety disorder – thinking and feeling.
  3. Session Two/b – understanding worry and generalised anxiety disorder – changes in behaviour.
  4. Session Three – understanding panic and phobias.
  5. Session Four – understanding obsessive compulsion disorders.

The self help programme devised by Dr Williams was designed to be taught among the general population in the community, including colleges of further education. It is our understanding that in those circumstances there would be two sessions lasting around two hours each. It was decided that time span was too long. 'Threads' has adapted the workbooks into sessions introducing the self help programme, introducing information not in the workbooks and allowing participation. The sessions without participation last approximately 40 minutes, with audience participation about one hour.

Several pilots have taken place and the feedback has been excellent with several suggestions being adapted. The small group format described below coming from a suggestions made by staff.

The sessions listed above are for large groups where there will be emphasis on the presentation. A small group presentation is being created that will concentrate on the Five Areas, and presenter’s experiences and allow more audience participation.

Advocacy

Though it is a requirement of the National Service Framework for Mental Health (NSF) that an independent professional advocacy service is provided there was no advocacy support in Rotherham for people who have a mental illness between 2004 and Autumn 2007.

Until 2004 a limited service had been provided by Rethink. The service ended when Rethink’s contract was not renewed. The absence of advocacy led to ‘Threads’ organising training to provide advocacy for people resident on the wards. To date there has been two courses led by the United Kingdom Advocacy Network and a total of 28 advocates given accreditation.

The advocates are spread across the community - independent sector workers, mental health support workers and carers – coming from a number of organisations including four from Doncaster. ‘Threads’ does intend to seek funding for a third course as soon as sufficient interest is shown.

Some of the trainees may never work as an advocate but ‘Threads’ believes the training is an aid towards self development and self-awareness and, as such, an end in itself. A carer friend and supporter of ‘Threads’ said ‘you can’t have too many advocates’ and ‘Threads’ is following that belief.

From Autumn 2007 ‘Speaking Up, an independent advocacy service located in Barnsley, had their bid accepted to provide independent professional advocacy services to patients using Acute Services accepted. The service will provide advocacy for concerns around the use of the Mental Health Act.

The ‘Threads’ advocacy service, Stand Your Corner, is a victim of ‘Threads’ success in assisting in lowering the number of official complaints. The service was offered to inpatients but the lack of concerns requiring an advocacy service has allowed Stand Your Corner to offer a service across the community.

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Who are we?

'Threads'’ is a group of volunteers lead by a mental health service user.  They include present and past service users, carers, workers and people who may not be using mental health services. We also have a wide range of skills between and if people do not have the skills they need – they get them. We are see that diversity as our greatest strength, a major reason behind our success and the ease of integration into the mental health community in Rotherham.

'Threads' is a company limited by guarantee seeking charitable status. It has several trustees drawn from service managers and workers, the group has three ex-officio members; our solicitor, a service manager and a worker. They act as non-executive advisers and ensure we maintain good practice. There is usually at least one ex-officio member at each steering group meeting. .All are volunteers giving their time freely and only recompensed for travel costs and other out-of-pocket expenses. Each volunteer except those in full time work are asked to commit to a minimum of one visit to a ward and one morning in the office per week. Training, attending workshops and other meetings and events is optional.

When people with a problem of poor mental health join us we ask for nothing other than a commitment to our aims and purposes. Experience has shown that if people need skills to work with ‘'Threads'’, they will gain them without coercion. When people join us via other routes they do because they have seen an advertisement asking for particular skills or gone to the volunteer service provided by Voluntary Action Rotherham.

While we do not see ourselves as an employment project, we do see ourselves as a stepping stone to other things. Several volunteers have moved on into employment and further education, our company secretary has moved into part-time employment. Other volunteers have moved on to other work or into further or higher education.

'Threads' is open and transparent, is an equal opportunities organisation and open to anyone who can work as a member of a group and is committed to our aims. All members have an equal voice in the administration of the group. 'Threads' is probably the most scrutinised group in Rotherham, that scrutiny is demanded and welcomed.

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What are our aims?

Threads has a central aim to gather the concerns of people who use mental health services in Rotherham and pass them to the person or service best able to deal with them. We do so in an informal, comfortable and threat-free environment.

We also:

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How do we achieve those aims?

We work in ways that are comfortable to people who have a problem of poor mental health and do so:

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Promotion

Threads attends a majority of conferences and workshops organised by DASH, Rotherham PCT along with other outside organisations and has a stall in the market places. We have also held a number of meetings with health workers and others to discuss 'Threads' and its work.

To promote World Mental Health Day, the Thursday Group and the creativity of people who have a mental illness. Threads organised a poster competition with prizes for the best three entries. Only nineteen entries were received but received glowing tributes from the members of the public who were invited to judge them. The A4 sized entries and a poster promoting the Thursday Group were mounted on a sheet of A3 paper. Up to 70 copies were produced and distributed across the 42 medical centres, the health centres, mental health inpatient units and libraries. The competition was repeated in 2007.

Threads promotes the creativity of people who have a mental illness by using paintings, photographs and poetry created by them at every opportunity.

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Could this service be performed by statutory services?

There are those that would say the work done by Threads should be a part of statutory services. The NHS does offer a complaints service, the Patient Advise and Liaison Service, the Independent Complaints and Advice Service, the internal complaints procedures and the Have Your Say service.

The plain answer then is yes. Could it be more efficient? If by the term efficient could it have been performed more effectively and more productively the answer again is a probable yes. Access to information, economies of scale available to professionals are in many instances closed to a service user lead project.

However:

One significant difference between a statutory and an independent service is the time taken to respond to respond to a need. It would take a service like Threads a fraction of the time required by services to get agreement on the need, let alone turn that need into act.

A 'Threads' initiative to employ an independent advice worker to provide assistance around debt, benefits and housing for patients resident on the wards in Rotherham took 3 months and four days from idea to action. The project was a partnership between 'Threads', Acute Care, The Healthy Living Project and the Citizens Advice Bureau and accessed non-statutory funding.

An initiative by Doncaster & South Humber NHS Healthcare Trust, Doncaster and Rotherham PCTs to provide independent professional advocacy for inpatients on wards in Rotherham and Doncaster began discussion in October 2005. At the time of writing, June 2007, the advocate in not in place.

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The Future

There is a need to ensure continuity and sustainability. The present funding from the Big Lottery Grant fund will end in December 2007.

We will need to begin to look at other sources of money no later than the middle of 2006, probably before and are to examine ways that funding can be generated. In that respect we have sought funding from other organisations to fund single issue projects.

Threads has begun the process to become a legal entity. Over the next few months the group will seek become a Community Interest Company (CIC). A CIC is a form of social firm but one that ensures that any profits derived from selling its services cannot be used for the profit of individuals but must be used for the benefit of the company.

There are two constraints to extending our work, the first is the lack of volunteers, the second is funding. Threads is expecting other people to join us and that will allow us to extend our skills base and we are preparing applications to funding sources to employ a part worker. We are also seeking a business size printer, that need has arisen because of the cost of printing the quantities we will need in addition to the newsletter.

In the longer term we would also hope to organise Thursday Groups in several other locations particularly in areas such as Swinton and Maltby. Sponsorship of the meetings and Talks has already been tentatively discussed. Sponsorship of the newsletter including advertisements to ensure its future is also under discussion.

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What have we achieved?

The Threads project has turned service user participation with services in Rotherham on its head. Conventional involvement has meant that service users working with health professionals would go to where the professionals work. In the Threads meetings, at least, workers go to the places used by service users.

We have embedded the name of Threads in services and the group is known to a broad swathe of people and services across Rotherham and further. It is said that if the term group is used someone will say Threads!

A Director of Mental Health Services in Rotherham and Doncaster will say Threads currently does what it says on the tin and does it very well. The statement continues, I think the organic approach of developing to respond to changing needs is a real strength and hopefully you can continue to do so.

That adaptability has become a strength, Threads can respond to a need in a fraction of the time needed by statutory or independent services. However he also says the danger of spreading too thinly or expanding too quickly is that you would lose this core aspect. Keep raising the issues and working in partnership to achieve improvements but you don't have to do everything.

Keeping to our aims and ensuring that we do what we will say we will do has been constantly kept in mind. While we cannot claim to have been 100% at all times we do believe we have been very close to that figure.

We have also realised that we cannot do everything but that realisation has one important rider. If we are asked to do something that is a logical extension of the service we provide and do not make time that request may not be made again. That will be more likely if the request is made by someone using services.

We believe that the service provided by Threads is changing the relationship between mental health workers at all levels and the people who use their services. That belief has been repeated by a number of service managers from the statutory and independent sectors. A service manager in the independent sector has said that the atmosphere (between service users and workers) is changing.

We have provided a balanced and non-contentious means of challenging service providers for the care they provide and taught people who use services that they may question. We have created an environment where the most hesitant may voice their concerns. We have, in the words of a service manager, crossed boundaries.

We have created an environment where those who work in mental health services and those who use them are seen as people. We have created an environment where people who use services, their family members, and professionals from all disciplines are able to sit down and discuss the aspects of health and social care, the social and economic difficulties and the damaged relationships that are fellow travellers with poor mental health.

Even more, inviting health professionals from across the many disciplines involved in care to talk to people who use services on their own ground has brought a subtle change to the balance of power. The talks have allowed people who use services to ask questions of service providers that they would not normally ask in the artificiality, time constrained and formality of a consultation or home visit. They have also allowed service providers to ask questions they might not have asked under the same constraints.

One participant came to a Talk to ask a senior psychiatrist a question she said she had been asking in surgery for 6 years without receiving an answer. She asked the question and received an answer. Later she asked why he had answered and was told that he was not just talking specifically to her but in general and if she again asked in surgery, she might not get an answer.

The comfort and security in the Talks allow people who have never spoken in public debate before to ask questions and raise concerns. They have also allowed workers of all ranks to ask questions as well. Sadly, two locations have ended their their programmes. Because the need to voice concerns still remains 'Threads' is to organise a series of afternoon workshops that will be financed by Rotherham PCT. The workshops will centre on issues that create barriers for people who have a problem of poor mental health.

We have increased knowledge of services and informed people of the choices available to them albeit in a small number of people. However we do believe that small number act like ripples in a pool by passing on that knowledge to others.

A CPN working from a Health Centre where Threads held a meeting came to a meeting to thank Threads for the benefit it brought his patients. The volunteer he spoke to did not know of any of his patients who had joined the meetings.

The most identifiable and significant benefits Threads has brought to people who use services (and by default to several mental health services as well) concern the Sunday visits to the wards.

The visits have been paralleled by the drop in formal complaints. The wards service manager will say that it would be correct to say that the fall has been dramatic, and I feel that this is due to the fact that the patients on the ward find it easier to raise their concerns with Threads, and so have them dealt with at an earlier stage which stops them mulling over something and ending up going down the complaints route. Threads will not say there has been large numbers of complaints passed to the group during the visits but would argue that it is the fact that an informal and comfortable route for their concerns is available to patients if they wish to use it is the point that matters.

The visits to the wards and the benefits they bring might be one of more easily quantifiable aspects of the Threads service particularly the financial costs involved in servicing complaints across the several agencies that would become involved and the time spent on them.

Threads in partnership with Early Intervention and Rotherham Housing Services organised a fortnightly Drop-In for people who have a mental illness to meet with staff of the Independent Housing Advice Service. While the numbers of people we would have hoped for did not attend the drop-in those that did had some of the questions they had explained in a comfortable and sympathetic manner. While no one obtained a house at that time all went away with the information they sort. One attendee had a medical priority restored after attending the drop-in. The knowledge gained by 'Threads' about housing services has also aided people on the wards.

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