“Making disability information accessible to individuals from Black & Minority Ethnic groups”

June 2009

A one year project funded by the EHRC (Equality & Human Rights Commission).

Focus Group 4 - Gypsies and Travellers (G & T)

Surrey has the 4th largest population of travellers in the UK (approximately 10,000) which is a fact often greeted with surprise by residents of the county. They are considered to be the “hidden” ethnic minority and can be the most overlooked group. However, when they do chose to access services and seek support, they frequently face open, overt prejudice and discrimination. They are commonly misunderstood, sometimes feared and their individual and group needs often ignored.

The transient nature of this community, together with their long standing tradition of removing their children from school at age 12 or younger, makes it more difficult for service providers to keep them informed about what is available to support them and for travellers and gypsies to build a better knowledge and understanding of the services available in a particular locality.

Surrey’s G & T population live on 58 sites, some of which are privately owned but most of which are run and owned by Surrey County Council (SCC). They are “tenants” on the council owned sites and can be moved on at any time with very little notice. They have no right of tenure and as new sites are currently not being developed, many gypsies have to double up on plots that were previously designed to keep extended families together. This fact alone causes one of their main health problems - stress and acute anxiety.

Traditionally the men have gone out to work leaving the women to look after their children and domestic issues. A new law will soon ban the practice of door to door cold calling which is an income lifeline to 90% of the men. A greater number of younger family members now want to stop leaving school at 12 years of age and continue their education because they can see the opportunities that this can provide. The concern amongst the elders is that they will lose their young to non traditional work and their social roots and culture will quickly be diluted.

Outcomes from this Project:

Established links with Community Development workers in Surrey and neighbouring counties and identified effective routes for disseminating information.
Supported a local eye testing project in partnership with Action for Blind People (see Section 2 of Visual Impairment)
Sourced and disseminated local and national health promotion materials

1. Community Development work in Surrey

Surrey County Council

Surrey County Council (SCC) owns 18 of the authorised sites in Surrey and another 16 are managed under an agency agreement with the boroughs and districts. SCC’s five site managers collect rents, sell electricity cards, deal with housing benefits and handle problems relating to property repairs and the services that flow to and from the sites. They meet every 6 weeks or so to keep each other informed of current issues and feedback on the latest Forum news. SID attended their meeting in January 2009 to talk to them about the disability services available and seek their thoughts and ideas of the best ways of supporting their residents. As a result of this, training on searching SID's AskSID data within “DissBASE” was offered to all 5 managers and SCC’s new coordinator who is based at their Kingston offices.

DissBASE - SID holds a database of over 3000 local Surrey organisations, within this national database, providing a wide range of community and disability services, from education providers and clubs to benefit services and buses. It is very user friendly and can be down loaded on to one CD Rom. SID keeps it up to date on a daily basis and it plays a major part of the free information service we provide for people with a disability and/or their carers.

The training sessions took place in March 2009 and attendees were introduced to DissBASE so that they could explore the type of information that was readily available and in turn, refer site resident’s questions to us.

Time was also allocated to talk about individual caseloads and information needs relating to all types of disability - mental health, physical, learning, hearing and sight impairment. Of the 5 who attended, only 2 had any residual knowledge from previous roles relating to disability benefits and rights so the training feedback was very positive in terms of their increased awareness and the routes they could take to refer problems. The examples they discussed included a problem of access in to a mobile home, disabled support for a person with Parkinson's disease, support for a person with Multiple Sclerosis, support for someone with a heart condition and the variety of routes available to apply for disabled facilities grants. They also mentioned the big fear G & Ts have of cancer which is borne out by recent national research.

Surrey Community Action

Surrey Community Action (SCA) employs two Gypsy and Traveller Community Development officers, Ann Wilson and Charmaine Valler, both of whom are gypsies themselves. Their posts are funded by The Big Lottery. Ann plays a major role in coordinating the Surrey Traveller Community Relations Forum and both are tasked with working alongside their community and voluntary and statutory sectors to help build capacity within them and ensure their views are taken into account during the planning and delivery of services. Their overall remit is to help deliver racial equality in mental health.

Both acknowledge that in delivering race equality in mental health, their G & T community will themselves have to be educated and supported to bring about change. Engagement with them by all sectors of the community is therefore essential but Ann is very clear that before we leap in to support them, this community should be asked first when new initiatives are being planned.

Gypsies have an inbuilt fear that their children will be taken away from them and placed in to care so offering services to them should be done via site leaders and elders, ideally through their Traveller Liaison Officers based at borough councils because they have an established relationship of trust.

Ann runs a workshop at SCA’s offices in Guildford for the benefit of both voluntary and statutory sectors, covering their long history and culture and dispelling some of the myths that exist. Attending the workshop is essential for any service provider needing a greater insight into their culture, in order to be successful in increasing channels of communication, identify their concerns and set about filling the gaps in services.

Providing this community with new channels of communication is high on Ann's list of priorities and she is currently looking to set up some women’s groups across a number of sites who would meet fortnightly or monthly to share issues. The emphasis will be on fun, social activities and community learning and advice. Service providers would be invited to speak on current social topics. The members would then take the information back to their families. It is hoped that these groups would be held at an external venue. She is also researching the practicality of holding “traveller event” days on larger sites which would run in a similar way to ldquo;community days” where organisations can take a stand to promote their services.

Ann is a member of the Surrey Traveller Community Relations Forum which is a service supported by Surrey Heath Borough Council from Churchill House in Woking and has been running for twelve years. The forum meets at regular intervals throughout the year and is open to everyone. Speakers are made very welcome.

2. Eye Testing Project

Action for Blind People

Charmaine and Ann are working in partnership with Action for Blind People’s Southern counties team whose local initiative is to visit Surrey G & T sites using one of their three mobile units. These mobile vehicles take out the latest aids, equipment, information and advice on visual impairment conditions and the fully trained teams that staff them, help people to try the technology and aids for themselves. Their plans to take them to two G & T sites in Surrey will be a “first&rd. For the vast majority of G & Ts, a sight test is not a priority so many had never had one.

A dedicated health visit such as this would appear to be highly valued by those sites approached and will hopefully play an important role in facilitating access to other health services.

For more detail on this initiative, please go to Focus Group 1 - Visual Impairment.

3. Local and National Projects and Health promotion Materials

Hand Held Health Record - 3HR

Surrey & Borders Partnership NHS Foundation Trust (SABP) is working in partnership with the South East Coast Strategic Health Authority based at Horley in Surrey on their Pacesetters programme. This is a new national initiative aimed at promoting diversity and challenging discrimination in how health services are provided in often challenging or neglected areas. The programme is designed to seek out, test and implement best practice that will hopefully result in reducing health inequalities for service users.

One of the projects is to improve the health status of G & Ts and both SID and SCA have been involved in the design of a hand held health record to be called “3HR”. A patient held record can often result in better continuity of care. This is due to be piloted shortly following its success in Scotland and will be promoted during Surrey's Gypsy & Traveller History month in June 2009. In a bid to ensure that eye health is included in the design content, SID introduced Action for Blind People’s manager, Sue Millar to SABP’s coordinator. SID asked the design team to include a section that covers all disabilities, and so complement the section on “Mental Wellbeing”.

By networking with the various G & T support teams across Surrey, one of the 3HR coordinators, Hassan Yaqoob, has started subscribing to Travellers Times magazine which in future will be circulated across the Trust to raise awareness of their issues. Hassan also plans to develop a section of their website to cover G & T welfare and include information on SID.

Regional Action and Involvement South East (RAISE)

RAISE exists to champion the third sector’s contribution to making south east England socially, economically and environmentally sustainable. They were recently commissioned by the South East England Regional Assembly to research the positive and negative aspects of life for GG & Ts. This research forms part of the assembl’s work to update the south east plan, a twenty year planning framework for the region, to identify how many sites should be provided in each council area. View the RAISE response.

The Derbyshire Gypsy Liaison Group was set up in 1987 and produces a Community Information pack on health and wellbeing entitled “Your Health is Your Wealth”. These packs can be used nationally and are supported by Derbyshire County NHS Primary Care Trust. Individual leaflets cover topics such as children’s, women’s and men’s health, arthritis, diabetes, heart disease and stress, depression and children’s disabilities. Brochures on how to get a Blue Badge, fire safety and carbon monoxide poisoning also feature. All are designed using bright colours, gypsy imagery and use a small number of words and large text. Many G & Ts are illiterate so jargon and long complicated words are unacceptable.

A copy of the pack can be requested via the website or by telephoning 01629 583300.

Other organisations such as Friends, Families and Travellers based in Brighton publicise their service by word of mouth, door to door visits and double sided flyers.

Summary

1. All of the gypsy support groups spoken to outside of the county of Surrey said that disability services were not well used mainly because the majority of their clients had very little knowledge of the services available. Given that this group of people have a significantly high level of health care issues, it is striking that their use of health and related services is so low. The development of outreach services is therefore vital in supporting them to achieve a better standard of health and a higher quality of life.

Given the right training and approach, Surrey’s Site Managers and outreach workers are best placed to refer back to local disability information services on a case by case basis that in turn can then support them with regular training and advice on topics such as benefits, social services assessments and equipment.

A useful and proven method of communication developed by the Derbyshire Gypsy Liaison Group are their range of specifically designed leaflets which should be adapted for Surrey’s sites.

2. Small scale, localised studies suggest that gypsies and travellers have poorer health status than the general population and have specific health needs that are not being systematically assessed. They also have significantly more self-reported symptoms of ill health than other UK resident, English speaking ethnic minorities, particularly chest pain, respiratory problems and arthritis. It is important to note that for this community, living in a house is associated with long term illness, a poorer state of health and anxiety - those who rarely travel have the poorest health. (The Health Status of Gypsies & Travellers in England 2004).

However, before embarking on health initiatives, gypsy and traveller communities and their Site Managers must be consulted and fully involved before schemes are launched. Training may be offered where appropriate to individuals on site who can then liaise with their families.

3. Services are up against a culture of pride in self reliance, tolerance of chronic ill health and a deep rooted fear of terminal illnesses. Treatment is often viewed with great scepticism and the belief that it is unable to make a difference. More creative methods of communication are needed including working in partnership with G & T site managers and leaders or “elders”. The commissioning of dedicated health workers who are culturally aware and trained would also be most welcome.

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