Mental Health guide
Having your say - a guide for service users
It is now generally recognised that you are an expert in your own treatment
and care. You should be involved in decisions about treatment and care.
You also have an important viewpoint that can help to plan services. There
are several ways in which you can have your say including:
- advocacy -aimed at ensuring that you have
a strong and central voice in how your own care and treatment is planned
and delivered and
that you
get your full rights as a citizen.
- feedback - telling people what you think of
a service, including praise, can be a very important influence. Many
organisations will
ask for your feedback. It should always be optional.
- appeals - if you are detained in hospital
under the Mental Health Act you can challenge the reason at an independent
tribunal.
- complaints - all organisations you deal with
should have their own complaints procedure.
- involvement:
- Service User Involvement Workers - Leeds Partnership Foundation
Trust and Leeds Adult Social Care have appointed a number of Service
User Involvement Workers over the last few years. They all have personal
experience
of using mental health services. They have a variety of specific roles,
some of them being based on wards. (For more information contact Partnerships
Lead Contact, Leeds Partnerships NHS Foundation Trust -_305
5951).
- Service User and Carer Reference Group c/o Leeds Involvement Project,
(307 3280). The formal link for service users and carers to mental
health planning in Leeds. Members of the Group represent the views of
service
users and carers on various committees and bodies.
- Mental Health Forums: These are open forums that anybody can take part
in, aimed at sharing information and influencing the development of
services. See details in the Having a say” chapter.
- User and Carer Places on planning and management committees. The committees
that plan services increasingly have places for users and/or carers,
either in an individual capacity, or as representatives of groups. Many
voluntary
organisations have places on their Management Committees for user representatives.
Users who have done this generally find it much easier if they have
back-up from their own network or an advocacy group. You can also get
training
in being a Management Committee member. (contact Voluntary Action Leeds,
297 7920).
- From April 2008 the Government plans to replace Patient Forums with
Local Involvement Networks (LINks) in each local authority. LINks will
be hosted
by an organisation who will receive a grant from the Department of
Health to do so. LINks will have a strong emphasis on supporting and
building
on existing patient forums and networks and involvement work carried
out by the voluntary and community sector. The aim is to create a system
which
enables more people to become involved and have their voices heard.
LINks will be made up of a diverse range of individuals (service users,
carers
and public) and community and voluntary organisations that support
engagement work. Their role will be to support patient and public involvement
work
in commissioning, provision and monitoring of services. They will have
powers to inform improvements at local service level via making reports
and recommendations, viewing some types of services and requesting
information and time scaled responses. This information will go to an
Overview and
Scrutiny Committee.
- campaigning - Campaigns can act at local, national, and even
international levels, and work on very specific issues, or very broadly.
Some campaigns
are service user/survivor led, while some deliberately involve people
active in mental health from all angles.
- training - A number of service users and survivors run training,
both for other service users, and for a variety of professionals. This
has proved to be a valuable way of getting across the views and experience
of service users, and thereby influencing policy and practice in the
short, medium and long term.
Barriers to having more say and how to deal with them
You may come across
a number of barriers that make it difficult to have your say, including:
- stigma: your views may not be respected because you use or have used mental
health services. However your views are valid and there is positive gain
from these being respected. You may be able to make this clear yourself
or you may wish seek support from an Advocate to do this.
- access: how do you find out where to go, or who to speak to, to make a
difference? You may have friends or know people who have had positive
experiences with certain organisations or individuals. You may choose to
research at
the Library or on the internet. You may call several places and speak
to them to get a ‘feel’ of what they are like. There is no right
way to do this but it can take time.
- jargon: professional language includes jargon and code words that some
users find intimidating or meaningless. Explaining in a long hand version,
without this code or jargon may take slightly longer but means everyone
is able to learn together. You may feel able to request that the language
used is less isolating or you may wish to speak to an Advocate about
how to do this.
- language: you may not speak English (or it may not be
your first language) and you may not be able to get an interpreter. Most
organisations
and Health Care professionals use Language Line. This is a basic telephone
service.
Increasing numbers of organisations do have multilingual staff or
access
to on-site interpreters. You may be able to access interpreters at
an organisation who may be able to speak to another organisation
for you. You may know
someone yourself who can speak in the language you require and may
be able to attend with you. Information in community languages can
also be found
on this website
- disability: you may require help from other organisations
to either talk through your needs or to arrange extra support for accessibility
- working practices: when and where meetings are held, the style and
etiquette, short deadlines and an insider atmosphere can all put
people off. Sometimes
organisations can become so accustomed to their practices they find
it hard to understand what someone coming into the organisation might
experience.
Putting your thoughts and feelings on paper and making sure the organisation
has this can be helpful both for them and you. You can do this anonymously
or you could ask them to respond in writing with what they suggest
they could do to make things more accessible for you.
- time: there can be a lot of long meetings, which fail to take clear decisions - particularly
frustrating and isolating if you are not being paid to be there and
everyone else is ! View your time as your most valuable resource. Look at
the amount
of time you are putting into something and decide whether the pay off
is worth it for you. You may decide to move on to somewhere else that works
better for you or you may decide to stick with it. Being clear with
yourself
about what you would like to achieve and how much time it will take
you may be helpful along with accessing support from any peers in a similar
position.
- money: many organisations appear to expect users to give their time and
expertise without pay. The real costs of involvement include travel,
sustenance (food and drink!), phone calls, postage, publications, writing
materials,
child-care or respite care; even loss of earnings. An updated City Wide
Reward and Recognition Policy was implemented in January 2007 by the
Leeds Mental Health Modernisation Team. It sets out details of payment and
eligibility
for Service Users providing time and information to Services. The Policy
sets out Involvement fees as ‘Individuals should be offered a minimum
involvement fee of £15 per session. A session would normally last
3 hours’ It is unclear how this policy works in practice. For more
details contact Leeds Involvement Project.