Welcome again to another blog for unpaid carers, like myself. My name is Matthew Mckenzie, an unpaid mental health carer in South London. As you are aware at the time of this blog post. It is Carers Rights Day 2019, which gives a chance for unpaid carers to know their rights and helps many organisations promote the cause of unpaid carers.

Each year Carers UK holds Carers Rights Day to bring organisations across the UK together to help carers in their local community know their rights.

However I want to place my thoughts on Carers rights in the UK and why it is important Carers know their rights. This blog post is aimed at unpaid carers who are under a constant battle to be recognised.

Your right to be heard

First and foremost, if you are new to the caring world, the very first thing you should be aware of is your voice. If you have to take the ‘cared for’ to hospital to the GP or are chasing up on the person you care for’s health, as a carer you have a right to be heard. Unfortunately it is not as easy as it sounds. Many unpaid carers struggle to engage with dragon GP receptionists (not all of them are bad) or are put off by health professionals too busy to hear unpaid carers.

Even if you as a carer are not querying about your ‘loved one’, it might be due to speaking out on what you are going through as a carer. If the carer’s voice is not heard, then you cannot begin the journey to find out more about your rights. Do not be silent as a carer, it is your right to speak out and speak up. Use your voice and request engagement, empowerment and involvement.

Your right to view information

Not as easy as it seems. You as a carer should exercise your right to view information, whether the information is about the ‘cared for’ or about yourself. There will be times confidentiality will block you from viewing information, but that should not always be used as an excuse. I always go by the rule in ‘The more people involved in someone’s care, the better the outcomes’. If you as a carer feel you are being pushed out of you role, then the risk is the ‘cared for’ might not get the support they need. What is worse is unpaid carers feel they are struggling in their relationship to the ‘cared for’, because the health/social services have a strangle hold on the ‘cared for’s information.

Another reason for carers to query about information is to carry out their role as a carer, if you do not know what you are caring for, e.g. information about the ‘cared for’s symptoms, then how can you cope as their carer? Yes, it is some important that service users have their own empowerment, but to think they do not need any support on their recovery journey could be naive and a risk to the cared for’s health.

As a carer pluck up the courage to ask for information, if it is explained why you cannot have it, then the services should give justifiable cause, they cannot request that they should not talk to you or ignore you.

Your right to be involved as a carer

This is different in being involved in services, I will come to explain that in a moment. As a carer, there is a risk that health and social care settings can hold meetings or make decisions that can impact on your caring role. As a carer there is a risk that you are pushed out of your role because someone has not taken the time to ask for your input. You as a carer have the right to be involved in the ‘cared for’s health.

If someone you love falls unwell, you have a right to ask what support they will get and have your views recorded. You as a carer do not want for someone to become unwell and have no plan in place for them or yourself. No one has the right to not involve you unless there are specific reasons why you should not be involved, which can be rare. There will always be old and outdated attitudes as why unpaid carers or families should not be involved, but the reasons are usually because relationships have deteriorated, especially in a mental health setting. These issues can and should be resolved.

If an unpaid carer feels left out then they make walk away or give up caring, which can put the ‘cared for’ health at greater risk in future.

Your right to be Identified

What is worse than failing to being involved in someone’s care? It is not being identified. As mentioned before at the start of this blog post, thousands of unpaid carers are new to the caring role. It is up the health and social care to identify them. Even numbers alone are not always an accurate reflection of the carer’s experience as those who make decisions only see the numbers, but not view the experience of the carers role.

As a carer you will need to push to be identified at the GP via the surgery’s carers register, on hospital patient systems and at social care settings. If you are not identified as a carer then you will miss out on your rights and support under the Care Act 2014. Those who identify carers will speak to them in a whole different manner on how they will speak to the patient.

If there was a big problem within the NHS, it is identifying unpaid carers, both young and old. Perhaps it could be a culture problem, or lack of carer leads and carer champions, I do not know as yet, but as we are all living longer it means the community has an even greater part to play in order to take the strain off the NHS, failure to do this will cripple the health service.

Your right to a carers assessment

As a carer, once you are identified then it should lead to a carer’s assessment. A carer’s assessment should not be used to scrutinize your role as a carer, but find out ways where you need support. It should not be an excuse to say your caring role is too hard and that you need to get on with your life, do not be put off. Demand that carer’s assessment because it can help plan for emergencies in not just for the patient, but especially for yourself. Take note there are many different kind of carer’s assessment and it does not help that some carer’s assessments are not ‘Care Act 2014’ compliant. What is worse is that carer’s assessment can be used as a tick box exercise where the assessor will quickly mark off carer queries and you won’t hear from them again.

Many unpaid carers refuse the carer’s assessment because it does not lead to anything and is not relationship forming. Still, it is important you get an assessment so information is recorded about your circumstances.

Your right to employment as a carer

Carers also have the right to take unpaid time off work for dependents in an emergency. Returning to work after being a carer may have an impact on any entitlements and benefits you receive as a carer, but because you are caring for someone does not mean that work should force you to put the ‘cared for’s health at risk. It must take a very hard employer to stop an unpaid carer from rushing to the hospital if the ‘cared for’s health declines, but this does not mean it doesn’t happen.

Your right to complain.

No one likes to be complained about, sometime’s carers do not want to make a fuss at all, it perhaps is in their nature as the role of the carer is to put the ‘cared for’s health first and themselves last. Still, mistakes and misunderstandings do happen. As a carer it is your right to complain. It is also important to complain effectively, there are ways of complain and there are ways to do all that wrong.

There are reasons where a family or carer become angry and aggressive if they feel action is not being taken regarding someone’s health, probably because the carer has been let down time and time again. Eventually the carer may risk developing mental ill health if they are battling a system that is designed to grind them down. As a carer check on Carer’s UK or Carers Trust website or ask if there is a complaint form at your health or social service in regards to an issue.

It is your right to complain, but please note some complaints can take ages to resolve.

Your right to some financial support.

Unpaid carers are usually caring for free, some people might even think that you should care for free anyway, but this view is incorrect, we all want to love who we hold close at no cost, but when someone’s health declines then we need that financial support to help us through a situation. If one person is caring for someone who is critically unwell, they cannot possibly work at the same time. If there is little or no financial support then expect the unpaid carer and cared for to be looking for their local food bank.

Your right to counselling and therapy.

There is this old view that unpaid carers have no idea on mental ill health, but this view is outdated as unpaid carers experience stress, depression, anxiety and god knows what else. Of course it will not be at the high level’s experienced of the ‘cared for’, but if ignored then you can bet the unpaid carer will be the next patient. Due to poor health pathways (e.g. access to health services), unpaid carers will have little to no support on accessing counselling or therapy.

If you as a carer find yourself going under strain, request support quickly. It is not worth risking your own wellbeing because you are doing what comes naturally in a civilized community ‘caring for one another’.

Your right to network with other carers.

Some people usually ask why I have set up and run 4 carer engagement forums a month voluntary. There are hundreds of reasons I can give, but the number one reason is carers should not be isolated. Unpaid carers need to know what is being developed for them and that they are not alone in their plight to be recognised or hold to account health and social services. Yes, I know NHS Trusts have governors who hold them to account, but then who holds the governors to account? Yes, you have guessed it, that would be the public, patients and unpaid carers. If carers in the community do not come together then it is harder to network and find out what an earth is happening to families and carers, it is harder to find out who is making the decisions and why.

It is your right as a carer to ask about carer support, engagement and strategy forums in your area and if one does not exist then push for support to set one up. If they refuse then set one up anyway, even if it is at your local pub, which will eventually lead to a strong army of unpaid carers.

• Weak brought together makes strong!

Your right to hear about your carers rights.

You might think Carers Rights Day would cover all of this, but you would be surprised. The whole point of Carers Rights Day is because there is a lack of awareness of carers rights. Trust me on this, time and time again it is harder to find at a local level your rights as a carer. Why?

Because people do not want the risk of unpaid carers exercising their rights and complaining, but it may not always lead to carers complaining, it might lead to unpaid carers becoming empowered in their role. As a carer you should ask what are your rights? Push for courses at a recovery college about carers rights. Do not be put off and referred to the local carer’s centre, because health and social care should also seek to empower unpaid carers as well.

Your right to be involved in services at ALL levels.

Being involved in health and social care is completely different to being involved in your ‘cared for’s health. I am involved at my local mental health trust at a very high level. Come to think of it, I am involved in NHS England, The Royal College of Nursing, CCG’s and many other mental health trusts. As a carer I use my experience to train nurses, engage with other carers, engage with health commissioner and even visit mental health wards.

Involvement is a tricky issue because unpaid carers do not really have the time, in fact most unpaid carers would like to put energy into planning their future, they are well aware that they cannot be an unpaid carer forever, which is why Carers Trust is tripping over themselves to run a project on getting unpaid carers back into employment and skills support.

Still in the meantime unpaid carers should be involved in health service design, promotion and even delivery via Co-production, which in itself is a whole complex ball game. Unpaid carers should be encouraged to sign up to an NHS trust involvement registry and peer support should be given. We cannot have an NHS system doing things to and for carers without carer input.

Your right to a health check up.

I should have put this further up the list, do to the time of this blog post I had my check up, but unfortunately not as a carer, it was a health check up every 5 years or so. This could be improved upon because unpaid carers are at risk of developing illness due to their role. There used to be a government initiative for carer check-ups, but due to the austerity drive (which has lasted for years) almost so much has been cut, no matter how commissioners play it, there are lack of GP surgeries, lack of tailored health systems and a lack of health staff.

As a carer, you should have the right to have a check up on your health. Do not neglect yourself, if your health fails then there is a risk that you cannot care for the person you support.

Your right for care planning for yourself.

There was and probably still is a drive at my local Mental Health trust for emergency care planning. This is because not all unpaid carers are alike. Older aged carers worry they will outlive the ‘cared for’ and wish for someone in plan. Still, carers of all ages want someone in place in case something happen to them. Think of it as some form of insurance. I have taken input from members of one of my carer forums and found through my Triangle of Care contacts a good example of carer planning for the future from Birmingham & Soulhil NHS Trust.

https://www.bsmhft.nhs.uk/service-user-and-carer/carers-families-and-friends/planning-for-the-future-and-emergency-planning/

PDF Pack below.

https://www.bsmhft.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=72346

Your right for education and skills training.

Unfortunately it is really difficult for unpaid carers to get access to education or training, because they will need this for the future or even now to get some financial support. Not all carers want handouts from the government, unpaid carers want to feel empowered and find work their own way, but without skills or training then it is impossible.

Your right to be referred.

Last but not least, as a carer you should be referred for extra support. BUT NOT constantly referred on and on and on in a never ending circle, I would laugh if such a situation was not so tragic.

Most unpaid carers are are referred to their local carers centre, but due to lack of staff and lack of resources, the carers centre can struggle, so unpaid carers should be referred to other means of support.

Conclusion

I got up around 3 in the morning to right this because I feel strongly unpaid carers have a mountain to climb due to knowing their carer’s rights. The ones I have listed are only a small part of what a carer’s right constitutes. If you are an unpaid carer, please exercise your carer’s rights and let other unpaid carers know their rights.

You deserve it.