1. Get the right information
As a carer it’s useful to understand the mental illness of the person you care for as much as possible. The more you understand the illness, the more you’ll be able to support them. Most important of all is to keep up a dialogue with that person: their experience of illness is particular to them and they are the best source of information.
In addition you can get valuable information by talking to your GP, reading our mental health leaflets or through a variety of charities like Hafal and Mind.
A great way to learn about mental illness – and about being a carer – is to join a carers’ group: you’ll meet others who are in a similar situation and be able to give and receive information.
2. Get the support you need to be a carer
If you find yourself in a caring role, make sure you get the support you need – especially from your GP and Community Mental Health Team (CMHT). Most importantly, ask your local social services department for a Carer’s Assessment.
A Carer’s Assessment will identify your needs as a carer. It will look at how being a carer affects you and how much caring you are able do while still continuing other activities outside caring. Most importantly, it will identify any help you may need.
Our advice is not to attempt to do everything for the person you care for: work with health and social care services to agree what you are prepared to do and how that will fit in with what they need to do.
Don’t be afraid to ask for support!
3. Work alongside health and social care agencies
From experience, we have found that building a positive and supportive relationship with services is an important step in providing good care. Working alongside health and social care professionals enables us to be clear about what things we can help the person we care for with, and what they can help them with.
When you think health and social care agencies are not doing what they should, you can advocate strongly for the person you care for. But it needs to be done in a constructive way. There may be times when you feel let down by the professionals but our advice is that you 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 person you care for any favours. Aim to 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. Again, an important opportunity to identify support is in a Carer’s Assessment.
5. Let the person you care for 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 that person, we think it’s important to let them find their own way forward as far as possible. You can achieve this by supporting them to exercise rights and responsibilities and make their own choices.
Stepping back and letting the person you care for make their own decisions can be challenging – and it can mean taking risks. But this is necessary as they take steps towards becoming more independent and achieving recovery.
However, there are times when you may need to…
6. …Get help in an emergency
While it is important to support the person you care for to take control of their own life, there are exceptions. Although you should try as far as possible to let them find their own way, don’t hesitate to follow your instincts if you think urgent assistance is needed. If you suspect that they (or anyone else, including yourself) are at risk of harm 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. One idea is to make a crisis plan with the person you care for where you agree what you will do in an emergency. Crisis plans are also included in the Care and Treatment Plan which we talk about below.
7. Take a break
For many carers it can be difficult to find the opportunities and finances to take a break. But 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. The Carer’s Assessment is an opportunity to identify your respite needs.
8. 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.
9. 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 may be detained, assessed and receive treatment against their wishes, the ‘Nearest Relative’ also has a number of legal rights including the right to receive written information about a patient’s detention.
The Mental Health (Wales) Measure 2010 (Welsh law) says that carers should be involved in the planning, development and delivery of a person’s care and treatment to the fullest possible extent. The new Social Services and Well-being (Wales) Act 2014, which came into force in April 2016, introduces important new rights for carers. For example, it means the local council must:
- find out what care the person wants to offer
- find out what the carer wants for their own life
- work out what services would help them.
It also means the Carer’s Assessment must look at:
- what work the carer does or wants to do
- any learning or leisure activities that the carer does or wants to do.
One of the main frustrations for carers can be the barriers that are created by confidentiality. The patient has rights to confidentiality which we should, of course, respect. However, if you are blocked from receiving information or from being involved by professionals on grounds of confidentiality then take advice from a carer’s advocacy service. Don’t take no for an answer, especially if you think risks could arise from you not knowing what is going on.
The Code of Practice to Parts 2 and 3 of the Mental Health Measure – a set of guidelines which explains how the Measure should be put into practice – allows professionals to consult with a carer against the patient’s wishes where it is considered to be in the patient’s best interest.
10. Focus on recovery
It’s important for a carer to help the person they care for 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. Members of the mental health charity Hafal believe that recovery depends on three things:-
- Empowerment and self-management: this means helping the patient to make their own choices and decisions and to act on those decisions.
- A Commitment to Progress: this means helping the patient to plan ahead and actively take steps to improve their life.
- A Whole Person Approach: this means helping the patient to address all the key aspects of life which contribute to well-being. These include work and occupation, education and training, relationships and physical well-being.
People using secondary mental health services in Wales now have the right to a holistic Care and Treatment Plan which covers a whole person approach. The Mental Health (Wales) Measure says that carers should be involved in writing this Plan, and that they should be treated by services as equal partners in providing care.
Our advice is that you do everything you can to support the person you care for to get an excellent Care and Treatment Plan: it provides their best opportunity to work towards recovery.
This plan was produced by Hafal. Download the original version or contact firstname.lastname@example.org if you’d like a hardcopy. Hafal is Wales’ leading charity for people with serious mental illness and their carers. Find out more about their work by visiting hafal.org