Carers' guide to caring for someone with a mental health condition
We chatted with unpaid carers who care for someone with a mental health diagnosis. Sharing their collective wisdom and advice. With tips for managing the system, supporting our cared-for, and most importantly - for looking after ourselves.
Top tips from unpaid carers, supporting someone with a mental health diagnosis
1. Register as a carer with your GP
“I didn't realise I was a carer”
Unpaid carers who care for someone with a mental health diagnosis, may be less likely to identify as a carer. This is certainly the view of the carers we spoke with.
However, identifying as a carer is key to accessing support opportunities for ourselves. Caring for someone with a mental health condition can be isolating, and negatively impact our own mental health.
“It might begin slowly or with a quite unexpected and sudden event. It can often be a long term situation, not always in crisis but needing ongoing management and support.”
Kyro (our co-founder) shared his experience of being a mental health carer in his blog “Do I look like a carer?”.
The emotional support and worry we may carry can have just as much an impact on us as more practical caring tasks. We are entitled to a Carers Assessment (Or Carer Support Plan in Scotland) which can be reviewed annually (or sooner if our circumstances change).
2. Know our mental health and carer legal rights
It’s really helpful to have a grasp of the mental health legal rights our cared-for have:
Mental Health Act 1983, what ‘sectioning’ is and our cared-for's rights.
Rights and restrictions. It’s possible there may be some restrictions for example around driving or insurance. But also some rights around access to medical records.
As well as our own legal rights as an unpaid carer. Including:
There is no legal obligation to be an unpaid carer
The legal right to receive support and protection from our Local Authority. We can start this process with a Carers’ Assessment.
The right to request flexible working
The right for our views to be considered by social services, when support is being put in place
Our right to our own wellbeing. Including our own personal dignity, and our right to our own mental, emotional and physical health.
3. Look after our own wellbeing and mental health
Take up (or find out about) health checks from your local GP service. Our own mental health is important too. Some GP surgeries have Carers’ Champions who are staff that support carers and act as a key contact for carer information. Plus the NHS offers free health checks for those of us over 40.
Our blog, How to care for yourself, when there’s no time to care for yourself has some simple ways we can provide the right self-care for ourselves.
4. Be well-informed about mental health medication
This can feel like a minefield. With medication not working, or our cared-for refusing it. We may also want to consider more holistic approaches, including diet, alternative and complementary therapies.
“The medical model is often the first thing that is followed, but it’s important that we and our cared-for feel well informed and given the opportunity to discuss and consider our options.”
“Change of medication can bring on lows at first… we may need to stick with it…”
5. Keep in mind, the overall health of the person we care for
Their overall health is also important - physical health, as well as mental health. It’s important to keep in regular contact with our GPs. And to keep an open mind about changes in behaviour or symptoms.
It’s not always a medication (for their mental health) side-effect. There may be another reason - such as infections, hormone levels, vitamin deficiencies, side effects of other medication.
It’s also not OK for new symptoms to be ignored, simply because they ‘may’ be a side-effect.
“If new symptoms are problematic, it’s important that they are looked into - there may even be a simple solution.”
6. Know our financial and legal considerations as a mental health carer
Council tax reduction or exemptions are available for people with a mental health diagnosis. This varies between local councils, but it’s worth checking in our area.
Find an advocacy service before we need it.
Put Lasting Power of Attorney (or Powers of Attorney in Scotland) in place as soon as possible.
Consider what Trust or Will provisions would be helpful, in the event our cared-for outlives us.
7. Know what good support for someone with a mental diagnosis looks like
We don’t have to settle if we’re not happy with the current support. If an individual or a particular service isn’t working for us, we don’t have to stick with it or put up with it. Make a note of what isn’t working - be specific. It will help to define what we want (and don’t want) as we explore other services or open up dialogue with the existing one.
“We had a befriender who was patronising. It would have been easy to dismiss the whole idea. But it turns out it was just that individual that didn’t suit us.”
“Finding the right support [for them] is key and there is no one size fits all - it can take some trial and error”
“If the current support service isn’t working for the person we care for or for ourselves, it’s important to recognise that this does not mean we or they have failed. - this can be very traumatic and have an impact on self-esteem.”
Being able to have conversations that are honest and true is key. The person we are caring for may want to please people, want to say the “right” things, and may not be honest about the support they need.
8. Creating a support network as a mental health carer
Many carers expressed that they had lost friends and family or experienced a lack of support. This could be because friends and family don’t know what to say or how to help. It can sometimes be due to disagreements in caregiving approaches.
Our ‘As a carer, we like it when our friends and family…’ blog includes 10 things friends and family could do to support us.
Disclosure (the ability to be able to talk to others) can be really hard for some of us. Either because our cared-for are extremely private, or we are. Sometimes there is also a fear of judgement or a perception that other people don’t want to hear about it.
While our support may feel like it shrinks in some areas. We do have an opportunity to think of support in terms more broadly than our immediate friends and family.
Having someone we can just pick up the phone to is so valuable. If the person we are supporting is not ready to let their family and friends know about their diagnosis, it can be helpful to have someone to talk to who is not part of our immediate social circle.
This is who carers say have helped them (outside of their friends and family):
If we do need a confidential and safe space to talk, we can book a free individual support call with our carer support team at Mobilise. Or we host daily online cuppas (over Zoom), which are another great place to share and get support.
9. Get accountability from mental health and carer support services
Carers shared that getting accountability is key. With staff turnover and long lead times for support, things can get lost along the way. Top tips for achieving this include:
Always take names of the people we talk to.
Write down dates and agreed next steps from any conversations we have.
Pop everything into a follow-up email. It helps to keep everything in our own minds - and helps with holding people accountable.
Buy a nice new notebook just for this - or we can use an app (like “Notes” or “Trello”) on our phones.
Ask us anything
What would you add? This guide is created from feedback of unpaid carers supporting someone with a mental health condition. Please help us to continue to grow this resource by sharing your own experience and advice. You can do this by simply emailing us.