Walk a Mile in... Barbara B's Shoes

Since childhood Barbara has been looking after and supporting her younger brother, John who has Down’s Syndrome and is now in his 60's. We spoke to Barbara about carers rights and asked about her experiences in these areas.

Listen as Barbara talks about carer assessments, juggling working and caring and sharing information with health and social care organisations. Barbara talks about what she has learned over the years and offers advice to those who are new to caring, including the importance of registering as a carer at your GP surgery and the benefits of getting professional legal advice if necessary.

Listen to Barbara's story to hear her experiences around carers rights. Or you can read about her experiences below. Barbara also recorded her general #WalkAMile carer story earlier in the year.

Barbara's Story - Carers Rights

I'm Barbara Buxton and I'm a carer for my brother who is 61 years old and has Downs Syndrome and learning disabilities. He lives in care and comes home to visit us at weekends and holidays when the day centre is closed. Christmas, and any time that we have free with the rest of family with our babysitting duties, we fit John in around that because he is 61 and the noise from the younger children does not always agree with him.

Is there any advice that you think that you could share that you think could help other carers?
The best thing I could say is that you don’t have to do it all yourself. But it can be hard to know what support is available and how to get it. There are lots of different kinds of support and you can find some more useful than others.

Carers have the right to a carers assessment. Have you ever had a carers assessment?
Sort of, I tried once but it was a telephone call and it was just questions about our lifestyle.  I do know that although we haven’t tried (recently), the whole procedure has improved and still in stages of improvement so it’s been quite good for a lot of people.

Another right that carer’s have is within their employment, various different rights that carer’s have, so did you work at the same time as your caring role, and if so, how did you find balancing both duties?
I did work and it was horribly difficult but I was in a very responsible position supporting the company that I work for and I find it difficult of balancing the responsibilities of the job with the responsibilities which I felt I had towards my brother.  Some people feel the need to give up work but I didn’t want to make that decision as I loved my job. Also there was the financial aspect as I needed the income from my job and I need the company from my job. So before you decide to give up work if you’re really struggling, try and talk to your employer if you have one that you think you can talk to, if not, you may be able to share your concerns with someone who will understand your problem and help you with your situation.  For instance, contact the social services department.  I know there’re not very popular but there are quite a few good people in those departments covering the areas where you may be struggling and they understand your situation and help you.

Some of the rights you have as a carer within employment is the right to request flexible working, the right to time off in an emergency, protection from discrimination, the right to parental leave and also the right to annual leave and pay.  In your employment whilst you were caring, did you find they accommodated your needs and supported you?
No they didn’t but I didn’t use those as I had a reasonable employer that I could thankfully talk to but not everyone is as fortunate as I was. I don’t know how anyone would go on if they had to use those as even if you are ill for a day to some employers they are not very understanding, never mind your caring role which is demanding and unrelenting at times.  I don’t know is the answer as I didn’t need to use them thank goodness.  But there must be a lot of carers out there who do need to use them but daren’t or can’t or won’t for many different reasons.  For me it didn’t work but hopefully for others it will work.

Taking time off in an emergency, is also your statutory right within employment, so did you have any experience with this. Did you have any emergencies that you had to attend and had to have time off for?
Heaps of emergencies, but I just juggled the emergencies along with everything else I was juggling, work, home, my brothers emergencies. You just juggle all the time. It’s not just a simple matter of pursuing this of the other you just face each obstacle as they come up.  That’s what makes it so unrelenting as you’ve no sooner solved once problem when another comes along.

Also, as part of the caring role you might deal with battles with information sharing. Care and help services providers have a duty to look after personal information with things such as medical records, address details and protect a person’s right to privacy.  However, as a carer it is often helpful to be told information about the person you care for, including things such as medical problems, test results and diagnosis.  Have you had any experience with this?
Lots of, it comes up repeatedly, for us we have a good relationship with the GPs and if John has to attend any hospital appointments, opticians or chiropody.  As soon as they realise there are any disabilities, they work with us to try and resolve whatever the problem is.  We are also registered at the GP’s as carers, that helps.  Because if we have to phone for any reason they respond in a very helpful way.  However, we battle on the carer and health service providers.  They seem to resent our presence.  The feeling from past is that once the person is living in care you step back you no longer have anything to do with matters.  We don’t, we’re quite active and so things like asking why hasn’t this been done, why hasn’t that been done, looking at the care plans and trying to help them to do things that we haven’t seen in the care plans, it’s difficult so the relationship can get strained between the us and the care provider. That’s the only one for us.  I know other carers have struggles in other areas but for us that all.  With everyone else, we get along fine and are very helpful.  The care providers do not always like to accept our presence in my brother’s life or comments or advice.

As a carer there are also legal matters involved, do you have any power of attorney or legal involvement for the person you care for?
Unfortunately not.  Not because we haven’t tried.  Because of John’s level of Downs Syndrome and his inability to  …………………..  he can’t tell you many things to help himself and ask him about power of attorney he doesn’t have the capacity to understand what you are talking about.  We have tried.  We have legal power over his financial matters but power of attorney we don’t have so it makes life very difficult for us legally if there are certain areas that they want to be stubborn and not work with us to try and resolve mattes for John.

Are there any other experiences regarding your rights as a carer?
The Care Act 2014 introduced a number of changes which we as carers felt, for the first time, in law, the Care Act gives the needs of carers the same recognition and respect as those of the people they are caring for. However, carers find it difficult to argue these points, legal points, and it’s difficult to argue these points in discussion about matters that need correcting as you would if you were a knowledgeable person, if you were a person who worked in the care industry and you know these rules and regulations and you can argue a fine point as a solicitor would. So, from my point view and what we do is we have a solicitor in the background who knows John, us and knows the law about providing care and that is what every carer should have. I know people tend to be scared of solicitors because of the cost and various other elements but we have found it extremely helpful to have in our background someone who will argue on our behalf and my brother to help him.  Without that we would have struggled to achieve a lot of the success we have had in providing him with the care and support.

This information was last updated on 18/12/2018