Welcome to another blog post by Matthew Mckenzie, a carer over in the south of London. Around late November 2016, I did a video to help promote “Carers Rights day”.  I have also been meaning to write up about the video in my blogsite, but never had gotten around to it. I must admit that I have been rather busy, mainly raising awareness of carers.

Now that I have a bit of time, I have decided to write my blog post about carers rights, but instead of being more informative, I have decided to be a bit more explanatory regarding carers rights.  First before you read on, please take a look at my video for Carers Rights Day.

The video pulls no punches because I have to be honest, it is a hard time for mental health carers and since carers by nature just cope and get on with things, it is so important carers are empowered so that they have the skills to support or care for their loved ones and even themselves.

What is a Carer?

So lets say for samples sake you are someone looking after a friend, relative or neighbour. How would it feel if you spent so much of your time and energy helping the ‘cared for’ only to go unnoticed, be hidden or misunderstood.

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This may not always be the case for those who do not like to be called a carer, after all becoming a carer is a very big role depending on what is asked of the carer.  Still, what if you only find out that someone turns up at your door cleans the kitchen floor and asks you to sign a form for their work?  To your horror, you see on that form that this person is called a carer.

How can this be?

A carer is someone who looks after the ‘cared for’, be it friend, relative or neighbour, unpaid and spends a long time with them.  They have vested interest in caring for that person rather than someone doing it for the money, that would be what you call a care worker.

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This is not to say care workers do not care about their clients, but carers are emotionally attached and if they are a relative then even the law needs to protect them. There is a culture to push carers our of their role and recognize care workers as the ones doing the hard work, this is clearly wrong and not a good sign of a caring community.  Not every carer rushes to put their loved one in a care home.

Carer isolation

How about another example, your ‘loved one’ has hit crisis point.  I am going to use mental illness as an example.  The mental health services seem to be ‘no show’ or gives excuses that everything is ok and that the service user is going through a ‘blip’.  So here you are, staying at home almost watching your ‘cared for’s’ every move.  They may be self harming, suicidal, bordering on psychotic symptoms.  Yet, there are no beds and the family stays away, you are on your own.  You now have to almost live the ‘cared for’s life, by answering correspondence, cleaning up, checking up on your loved one, putting a lot on hold.  You now feel isolated.

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For Carers Rights Day 2016, we must recognise that it can be so easy for carers to be isolated, there will be times that no one is there to help, but when things do begin to settle down, its as if the carer was not thanked for their efforts.  Carers should be referred to carers support groups or given support so that they do not have to desperately become so isolated.

Seek and you might find

Carers unfortunately should not expect support to be given to them all the time, it is so important that carers do a bit of leg work and find out what support services are in the area. However, it should not be an excuse for services to state carers must do their own research for support.

Support services need to highlight what support carers can find in their local area and if it is not available, then why?

It is your right to ask

There is a habit that if a carer raises a query about the state of services or about their loved ones health, then confidentiality rears its ugly head.  Confidentialty at its best, protects the ‘cared for’ and the carer.  It it’s worst and you can expect Serious Incidents to go through the roof.  There is no excuse for it!! Carers DO have the right to ask questions or query an issue if something does not seem right.

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How do we know that the health professional has come to a right decision?  Whose life is that decision going to hang in the balance? Who pays the cost?  Don’t just sit there and wait till things go wrong, its best to ask and if the professional says they cannot tell you, then ask why.

The Care Act 2014

If things were going well for carers, would we need the Care Act? Obviously things are not going well and the Care Act was drafted to give carers that much needed support and protection.  Unfortunately the Care Act is not so simple to explain not only to carers, but to the Local Authorities.

There has been problems where money set aside for carers has been spent and there is little to monitor carers rights.  The care act at its core gives carers the right to ask for an assessment and the local authority must assess the carers needs, however there is much more to the Care Act than it seems.

Carers being recognized

This is almost similar to tackling the carer isolation problem, however the important point is that the health authorities can fail terribly on this point.  This basically goes down to what is recorded on many health systems.

If a carer is not recorded in a carer database, then how do we know that the carer is being supported?  If there is a lack of carers recorded, then it is no surprise that there will be a lack of carer assessments or a lack of carer engagement.  It is of the upmost importance that carers be recognise as soon as the ‘cared for’ starts to use the health services.

Treated with respect

As a carer myself, I have been shouted at for raising a query, sworn at, lied to, shut out and blamed, and yet this is only minor compared to what other carers go through.  It can be well known that health professionals protect each other if a carer raises a complaint, who is to monitor what happens if someone from the services bullies a carer or worse that the culture of the health service ignores carers concerns?  Would it be the complaints service perhaps?

If everyone decided that they can treat others with disrepect than the caring community would fall apart.  It is not a good example for anyone in the health service to learn, being under strain or pressure is no excuse.  Carers should be treated with respect.

Advocates

Unfortunately pressure can be put upon the health service to cut corners and when carers raise concerns then health professionals sometimes can get very defensive.  Carers should take advantage of advocates, especially ones that are well trained.  Without a carer advocate, it can be all too easy to push carers aside with complex NHS jargon, bully carers or make carers feel that they are to blame.  A good advocate will see through all this and hold the professionals to their word and to account.  A carer has a right to an advocate.

Legal Advice

Carers also have the right to legal advice.  Sometimes the health service stays quier about this when things go wrong and are more than often recommend legal advice to the ‘cared for’ or service user.  What about carers? What happens if a serious incident takes place?  Sometimes all that is left for carers is to take legal action, but why should things take such a disastrous turn?  Well perhaps the carer was not listened to in the first place.

Confidentiality

As there is confidentiality for the service user of mental health services, so there should be confidentiality for the carer.  A good example is if the carer or caregiver raises a serious concern with the health professional only for that professional to left this slip to the ‘cared for’.  The result? The carers relationship is ruined?!!? The ‘cared for’ now distrusts the carer and the carer will find it up to raise concerns to the professional.

There is also stigma for some some people who do not want everyone to know about their caring situation, this is not the case for all carers. but I stress that you may not want to be called a carer, but make sure you get your carers rights protected.

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The bad side of carer confidentiality is that it can be an opportunity for the health services to play up the carer stigma and hide carers away in their database.  A good balance of confidentiality helps protects the carer and also recognizes them.

To Sum up

Carers rights is a vast subject and there are many more examples which I have unfortunately missed.  If carers rights are not protected, then this can filter down into where the ‘cared for’ begins to suffer.  Let there be no mistake, too many issues regarding failure of care for the ‘cared for’ leads to the health services suffering.

To stop the rot, we must empower carers to know their rights, god knows they deserve it.

Good luck on your caring journey