Part 2 -
Practical Steps

As well as developing positive ways of communicating the people in the video drew on various other resources to help them in their daily lives.

Unfortunately there is no one definitive list of resources – as Vanessa says:

“Over the years I have found a lot of support services out there but it isn’t necessarily handed to you on a plate.
It’s one of the most infuriating things. Don’t assume that a service doesn’t exist just because nobody has told you about it.”

What is available will differ between areas so it is worth investigating locally. In addition some national organisations as well as having an overview of mental health issues will have information about what is happening in your area (see Contacts).

It may mean quite a bit of research on your part.

Below are some suggestions and information to help you.

 

Advance Agreements

“My brother and I sat down to draft an Advance Agreement.  
And to our surprise, the whole thing, covering issues from medication to his pet dog,
only took half a day. The peace of mind is far less quantifiable.  
The whole family is reassured now it’s in place.”

An Advance Agreement enables a service user to formalise their wishes about treatment and domestic matters when they have a crisis. It has sections on medical care and home life and can include details about allergic reactions to drugs, the care of dependants, pets and houseplants. This can give peace of mind to everyone involved.

Once completed and counter-signed by an independent witness, copies of an Advance Agreement can be sent to:

The service user will also keep a copy.

For further information about advance agreements, and guidelines on how to put one together, contact the Institute of Mental Health Law or the National Schizophrenia Fellowship.

(See the Contacts section)

 

The Care Programme Approach

There has been some attempt to standardise the quality of mental health treatment and this standard is called the Care Programme Approach.

This means statutory services must work with service users to devise an individual Care Plan. Carers can use the Care Programme Approach to put their views across and to be recognised and named as part of the team. They may be nominated - by the person they are supporting - as someone who can alter appointments and otherwise give and receive information as the Care Plan is carried out.

 

Carers’ Assessments

If you provide regular and substantial care for a person on the Care Programme Approach you are entitled to an assessment of your caring, physical and mental health needs on at least an annual basis. (National Service Framework for Mental Health) This assessment is quite separate from any provisions in the Care Plan of the person you are supporting.  Once assessed, a carer’s written care plan should be drawn up by you and your assessor.  

Assessments are made by social services and the kind of help you might get differs widely between areas. Ask your general practitioner or Social Services about an assessment. In addition the National Schizophrenia Fellowship can provide further information on carers’ assessments (see Contacts: NSF advice line) including a Carers’ Assesment Pack (see Contacts: NSF publications line).

 

Crisis Cards

“Having a crisis card in my purse gives both me and my family
a peace of mind we haven¹t previously enjoyed.  

If anything happens to me in public,
then my husband¹s contact numbers are there
and he can be with me, taking care of the situation,
as soon as possible.”

A crisis card - like a diabetic or donor card - is carried by somebody who may experience a mental health emergency.

The main aim of the card is to make sure that an advocate or nominee will be contacted in a crisis when the carrier might have difficulty making their wishes known but it can also provide other essential information.

There are a number of crisis cards now available to users/survivors. Some are issued by user/survivor organisations and some by statutory agencies. It is worth finding out if there is a local version of a crisis card in your area. If so, its use may be widely recognised and accepted locally and thus more effective.

 

Finding information about mental distress

Finding  accurate, current information on mental health diagnoses, medical care and treatment is always a good idea, and another way of demonstrating your support and willingness to understand.  There are many different ways to do this.

Support groups can be a shortcut to hearing the latest news, and are particularly useful as a means of hearing about mental health care developments in a quick, understandable way.
Membership of a relevant organisation will give you their newsletter with the latest information delivered to your door. This could include details of leaflets, videos, books.

Many mental health organisations have their own publications. See: Carers National Association, Mental After Care Association, Manic Depression Fellowship, The Mental Health Foundation, National Mind, Depression Alliance, National Schizophrenia Fellowship etc…

Your library, Citizens Advice Bureau, Community Health Council and Council for Voluntary Services will also have information.

There is also the Internet.

 

The Internet

The Internet, or World Wide Web, has rapidly become a valuable source of health information of all kinds, and you don’t have to have access at home to take advantage of it. Libraries offer the service and will explain how to use it, voluntary organisations may be able to help, and there is an ever growing number of Internet cafés.

As well as information and advice, you can use the Internet to make contact with others. You can forge links with like-minded people, or people who share your problems, across the globe.  

You can also be anonymous in a way that is not on offer within local support groups and services, and many people enjoy this aspect of chatting on the Internet.
Offering help, and sharing information widely is also good for self-esteem.

Another advantage is that you can access information and perhaps the support of another person whenever you want it ­ twenty-four hours a day, seven days a week.

As a starting point look at the websites in the Contacts section.

 

Planning for the future

“I would go as far as to say that the future care
of my son is never out of my mind.”

Some people worry about what will happen when they can no longer give support to the person they have been caring for. If this is an issue that concerns you then make inquiries about what’s available in your area.

You don’t have to wait for a crisis to address these issues or to take advantage of the solutions. Some of the solutions could be put into place much earlier with great benefit to all concerned.

National Schizophrenia Fellowship Wills and Trusts (see Contacts) can give advice on these issues including information on keeping the family home.

 

The Reality Check questionnaire

In the video David and Vanessa used a questionnaire to clarify their perceptions on how they had communicated during the week. They got this from their local hospital.

 

Respite

Sometimes you will want a break, or the person you are supporting may benefit from a break from you. Contact your local carers’ support group or Citizen’s Advice Bureau, Community Health Council (to be superseded by Patient Advocacy Liaison Services by 2002), Council for Voluntary Services or Mental Health Trust, for options in your area.

Respite can take many forms, all of which can prove really helpful to relationships bearing the stresses and strains of mental health difficulties.  

“Be aware of your own health.

Don¹t become exhausted to the point that
you are no good to yourself or anybody else.”


Weekend breaks or even holidays for either party are also possible, providing a chance to build new confidence and renew energies. The National Schizophrenia Fellowship, for example, runs two dedicated respite centres, which cater for various interest groups around the year. There may be schemes available locally too which you could find out about.

Forresters is a National Schizophrenia Fellowship Respite Hotel – see Contacts. They are also knowledgeable about funding for respite.

Local Authorities can fund respite through the Carers Special Grant. This came into existence in 1999. Government money is given to all English local authorities to provide a diverse range of services to give breaks to carers.  Ask for further information in your own area.

 

Support groups

Support groups in your area
Self-help groups for service users and for those who support them are now spread widely around the country. They are undoubtedly a highly useful source of information, advice and mutual help, as well as a forum for letting off steam.

Many organisations run self-help groups. You may find what you want through the Contacts list.

A self-help group is made up of people who are all dealing with a similar difficulty. They meet on a regular basis, say once a month, to discuss issues that have arisen for them. Sometimes a meeting will focus on a particular theme.

Some groups are run by organisations that deal with a particular mental health diagnosis (eg Manic Depression Fellowship, Depression Alliance). The National Schizophrenia Fellowship is for people with severe mental health difficulties and those who care for them. Service users and those who support them may attend the same or separate meetings.

Groups for those in mental distress
Many people who experience mental distress derive great comfort and support from the company of other people who share experience of the psychiatric system.  It is usually a good idea to support such links and take advantage of an opportunity to step back.  Many organisations have support groups (see Contacts list) and there are also drop-in services and day centres provided, for example, by Local Mind Associations.

“Friends who have been through the system are a source
of so much knowledge and inspiration for me.  
Family and other friends need to understand
the importance of my relationships with other survivors.”


Groups for those who support them
The Carers National Association and the Princess Royal Trust for Carers have information about groups and other support for carers (see Contacts).

 

Talking treatments

These include counselling, psychotherapy, and cognitive behavioural therapy.

Supporting someone with mental health difficulties can put you under a lot of stress. You may benefit from a talking treatment yourself. It may also be beneficial for your family to have family therapy.

“I think we now have a far closer, far more open relationship
with our teenagers than a lot of our friends do.
 
After sitting in a room with a counsellor,
opening up and saying how we really feel,
there is no room for treating them as ‘too young to know’ etc.”

“I didn¹t think I had problems,
I saw myself as there to deal with other people’s,
but once I sat down, all my worries came tumbling out.  

I really look forward to the sessions now.”

Family members may benefit from counselling on an individual basis.

“Once my teenage son had been counselled
about his fears that he would inherit manic depression,
he became actively involved in our local support group
and talks openly to others about living with the illness in the family.”

Provision of counselling services will vary across the country, as will waiting lists. Your GP should be able to tell you about NHS resources locally, but do explore alternative sources of provision in your area for individual, group, couple and family counselling. Some will be available through voluntary organisations and some privately.

Look for BAC (British Association of Counselling) accredited counsellors, or UKCP (United Kingdom Council for Psychotherapy) or BAP (British Association of Psychotherapists) members.