CS 20
Legislation Committee No.5
Response to the Proposed Carers Measure Strategies (Wales) Measure
Hafal
1. About us
Hafal is the principal organisation in Wales working with people recovering from serious mental illness, their families and carers. Every day our 160 staff and 150 volunteers provide help to people affected by serious mental illness and their carers across the 22 counties of Wales.
Hafal is run by the people it supports: people with serious mental illness and their carers and families. We have over 1,000 Members; over 400 of these are carers. The charity is founded on the belief that people who have direct experience of mental illness know best how services can be delivered. In practice this means that at every project our clients meet to make decisions about how the service will move forward. The charity is led by a board of elected Trustees who have direct experience of mental illness, including several carers.
All of our services are based on our unique Recovery Programme. Recovery means regaining mental health and achieving a better quality of life. Many people with severe mental illness can make a full recovery; others can make far greater progress than has traditionally been thought possible. Hafal’s Recovery Programme involves creating a step-by-step plan identifying goals in key areas of life and the supporters who can assist in achieving those goals.
Hafal provides a range of services and support specifically for carers. These include:
• family support: working closely with carers and family members to provide the best support for clients
• advocacy: supporting carers by representing their interests
• breaks for carers: engaging a person being cared for in an activity so that carers can take a break
• accessible information and advice: providing carers with the latest news and information relevant to them
• mutual support: enabling carers to support each other through carers’ groups
• giving carers a voice: especially in the planning of local services
• awareness raising: highlighting carers’ rights, such as the right to have a needs assessment under the
Care Programme Approach.
Hafal also campaigns vigorously on behalf of carers. In 2004 Hafal set up the groundbreaking All-Wales Mental Health Carers Forum especially to address the needs of the carers of people with mental illness. The Forum now provides a much needed voice for carers on a national level, focusing on concerns such as:
• the provision of respite services
• raising the profile of mental health carers
• the commissioning of mental health services
• the Carers’ Strategy and its grant scheme.
2. Response to the consultation
- In response to question 1, Hafal’s 1000 Members believe that there is a clear need for this legislation. It will assist in addressing the needs of carers, will engage the NHS with the issues facing carers, and will promote Wales-wide standards.
- In response to question 2, the Measure needs to take into account that each carer has individual needs, and that the opportune time to provide information and advice on caring will be different for each carer. For example, many carers assuming responsibility for someone for the first time will not immediately recognise themselves as a carer.
- Providing timely and appropriate information and advice is particularly relevant for young people with caring responsibilities who may need additional support if they are to avoid falling out of full-time education or work.
- In response to 2(b), Hafal Members feel that too often the concerns of carers are not taken into account. They have needs that are discounted and sometimes ignored. So we welcome a Measure that is robust in this area.
- If the Welsh Assembly Government exercises the powers in Section 5 (2) (a)-(f) sensitively, and accounts for local need, then this should be welcomed. The requirements of carers are both generic and specialised, and permitting recognition of suitable local variations, where appropriate, should be encouraged.
- In response to 2(c) we believe that establishing a Lead Authority is the sensible approach. Establishing and maintaining joint working is difficult and adding a clause that allows for no designated lead could cause problems with the process of submitting a strategy. It is recommended that the exception clause "or, where there is no designated lead, the responsible authorities acting together” is removed.
- Carers provide a vast level of unpaid care and this Measure could assist in ensuring that they are provided with timely and accurate information and support which will allow them to continue to offer such support. Without carers the additional burden on the NHS and other authorities will be unsustainable in any financial climate, let alone the current climate.
- Hafal’s Members already play a part in local forums where carers’ needs are considered. Engaging such local groups in the suggested arrangements will be important.
3. The priorities of carers of people with serious mental illness
Recently Hafal consulted with its carer Members about the advice they would give to other people in the same position. The result was a set of ten key 'tips’ based on their experiences of being a carer. We list these ten tips here for the interest of the Legislation Committee, and ideally as a point of reference to inform the future provision of information, advice and services to carers.
1. Get the right information
An important step to becoming a successful carer is to understand the patient’s illness as much as possible. The better you understand the illness, the better you’ll be able to support the patient. Most important of all is to keep up a dialogue with the patient and ask them about their experience of the illness: a patient’s experience of illness is particular to them and they are the best source of information. In addition there will almost always be familiar symptoms which are described in information elsewhere: talk to your GP, read Hafal’s leaflets on schizophrenia or bipolar disorder, and use the internet or your local library to gain a better understanding of mental illness.
2. Get the support you need to be a carer
Make sure you get the support you need as a carer, especially from your GP and Community Mental Health Team. Ask your local social services department for a Carer’s Assessment: this will identify what help you need and who can provide you with that help. It is important not to attempt to do everything for the patient: work with the relevant agencies to agree what you are prepared to do and how that will fit in with what they need to do to help the patient.
3. Work alongside health and social care agencies
Aim to build a positive, supportive relationship with the professional agencies. Working alongside these agencies will enable you to be clear about what things you can help the patient with, and what they can help the patient with. When you think health and social care agencies are not doing what they should, you can advocate strongly for the patient - but in a courteous and constructive way. There may be times when you feel let down by the professionals but try to see matters from their point of view and always keep communication going!
4. Look after yourself
Sacrificing your own wellbeing won’t do you or the patient any favours. Try to enjoy a good quality of life for your own benefit and to provide a good example to the patient. We advise that you enjoy an active social life, find time to follow your own interests and work to maintain your own health. It is particularly important to look after both your physical health and mental health - don’t be ashamed to take trouble to protect and improve your own well-being. If you find it hard to achieve this, talk to health and social care agencies and see how they can support you.
5. Let the patient find their own way
When someone has a serious mental illness it’s tempting to make a lot of decisions for them. But to really help the patient you should let them find their own way forward as far as possible. You can do this by supporting them to exercise rights and responsibilities and make their own choices. This can be challenging and frustrating and it can mean taking risks. But this is necessary as the patient takes steps towards becoming more independent and achieving recovery. However, there are times when you may need to...
6. Get help in an emergency
In point 5 we talk about supporting the patient to take control of their own life. But there are exceptions to this: although you should try as far as possible to let the patient find their own way, don’t hesitate to follow your instincts if you think urgent assistance is needed. If you suspect that the patient or anyone else is at risk of harm (including yourself) then we advise you to ring the duty social worker and/or police to get a rapid response. It is especially important not to hold back because you are worried about being a nuisance or because of previous "false alarms” - if you think urgent assistance is needed then get help fast! Meanwhile keep yourself safe and don’t intervene if you feel at risk. It’s a good idea to keep phone numbers handy too.
7. Take a break
In order to do the best job you can as a carer it is important that you get breaks from your caring commitments. These should include both regular breaks and longer holidays from caring. Be clear with the Community Mental Health Team, the GP and other health and social care agencies about this and ask for their cooperation in supporting you to take breaks. There may be specific local services you can access - see the "Getting more information” section opposite for more details.
8. Know your rights
As a carer you have rights. One of the most important rights is to have a Carer’s Assessment where social services look at your situation and decide if you are entitled to any support. If you haven’t had an assessment yet, contact your local social services department and ask for one. Under the Mental Health Act, which applies to patients who receive compulsory treatment, the 'Nearest Relative’ also has a number of legal rights including the right to receive written information about the patient’s detention. One of the main frustrations for carers are the barriers created by confidentiality. The patient does of course have rights to confidentiality which you will have to respect: however, if you are blocked from information or involvement by professionals on grounds of confidentiality then take advice from a carer’s advocate - don’t take no for an answer especially if you think risks could arise from you not knowing what is going on. For more details see the "Getting more information” section opposite.
9. Get financial help
Whether you are in work or have a full-time caring role it is essential to make sure you get all the financial help you are entitled to. Carers may have access to a range of benefits. Carer’s Allowance is the main benefit specifically for carers. However, you may also qualify for other benefits not specific to your caring role. To make sure you are receiving all the financial support you are entitled to, get a benefits check. Contact your local Citizen’s Advice Bureau for more advice.
10. Focus on recovery
It’s important for the carer to help the patient to focus on recovery and not simply on coping with a mental illness. Recovery means taking short steps towards long-term goals and achieving the best possible quality of life. Hafal’s 1,000 Members have found that recovery depends on three essential things as follows:
A. Empowerment and Self-management: this means helping the patient to make their own choices and decisions and to act on those decisions.
B. Commitment to Progress: this means helping the patient to plan ahead and actively take steps to improve their life.
C. Whole Person Approach: this means helping the patient to address all the key aspects of life which contribute to wellbeing. These include medical treatment; other forms of treatment including psychological interventions; personal care and physical wellbeing; training and education; finance and money; parenting or caring relationships; social, cultural and spiritual aspects; accommodation; and work and occupation.
4. Further information and contacts
Hafal would welcome the opportunity for members and staff to offer oral evidence to the Committee.
For further information, please contact:
Bill Walden-Jones, Chief Executive
Hafal
Suite C2, William Knox House
Britannic Way
Llandarcy
NEATH
SA10 6EL
Tel: 01792 816600
Fax: 01792 813056
Email: hafal@hafal.org
