Questioning local MP on Carers Support issues

Benefits, finances and funding
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Whilst on a dash to grab some shopping this morning I noticed our MP - Luke Hall (Cons. Yate and Thornbury) was holding an open-air Surgery.

I grabbed my chance and asked him his views on the support available for Carers - both financial and practical.

He started trotting out the Party line on Government having to balance budgets and then I pointed out that I get a grand total of £76.75 a week for working effectively a 168 hour week. Just 45.68 pence per hour. I asked how that looked when compared to the Minimum Wage or even the Living Wage… He admitted it did not seem to be enough!

He has promised to write to the Health Secretary to ask how the Carer’s Allowance Rate was calculated. THAT will be interesting to find out - if they don’t just waffle around and fail to answer.

Also raised the issue of Carer’s Assessments and how mine took seven months to be done. He was amazed at the delay. When I told him the detail of how they claimed I had been spoken to by phone and “interviewed” when all they did was send a form by email he was genuinely shocked! South Glos Council WAS Conservative Controlled and he has obviously been fed the Party Line from them as well.

I pointed out that my GP has said he HAS to keep me healthy so I can look after Graham and suggested to Mr Hall that should I fall seriously ill the Health Service would have to provide TWO care places for us - how much would that cost in comparison to making sure I get the support i need now???

Oh then the NHS waiting lists. He was again surprised when I said that G has been waiting a year for a Neurology Out-Patient appointment and that we have been told it will be at least another 12 months before he is even seen - for the first time - not for any scans or treatment…

I think he may actually have had his eyes prised open slightly… I will be following up with an email to confirm all the details so he doesn’t have to try to remember them. After all I wouldn’t want to tax an MP too much on a Friday.

Co-incidently I have been asked to join a zoom meeting with Ed Davey - Leader of Lib Dems in a few weeks time. It will be interesting to compare his reactions to questions to a Conservative MP. Perhaps I need to write to our local Labour Office for their responses too…

I will update when I get any more information.

Is anyone else in touch with local MP’s to educate them?

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Well done Chris! I do agree that MP’s need to be aware of what we have to deal with on a day to day basis. Penny Mordaunt’s mother had cancer and she spent some of her teenage years being a carer for her twin brother and father when her mother was so ill and then died. I feel it made Penny more compassionate. .

Not sure if Ed Davey has been a carer at some stage in his life? Worth checking out? I did think of emailing my MP but he is Andrew Bridgen and not even sure which party he is now standing for!

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2020 leadership bid

In June 2020, acting leader Davey launched his bid to become leader saying that his “experience as a carer can help rebuild Britain after coronavirus”. He proposed the establishment of a basic income to support carers, and said that the Liberal Democrats should be “the party of social care”.

It does sound as if Ed has been a carer as a youngster for his mother and grandmother. That said, not sure enough to get MY vote but if there was a coalition then maybe just maybe he could progress this?

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Here is the email I have just sent to Luke Hall MP… (the reference to my big mouth is because I have written to him on a few local matters previously, and his Office Manager who was present, recognised my name!

Good Afternoon Luke.

Thanks for your time this morning at your open-air Surgery. Now you can put a face to the ‘big mouth’!

Just to clarify the matters I raised:

Support for Carers

Yes, as I mentioned this is a very personal situation as my husband, Graham suffered a Stroke 16 months ago and has had a series of other health issues since then. When the stroke hit, we had a successful business and worked together – both self-employed and were recovering from the problems of the pandemic. We had managed to keep our business alive (without the SESS we would have gone under) and were able to work right through as we provided medical treatment. It became clear very quickly that Graham would not be able to return to work and our plans to sell the Practice to finance his retirement at the end of this year went out of the window. I had to close down and become his full-time Carer.

By full-time, I do mean FULL-TIME. I have to be available 168 hours a week. As I mentioned Graham was lucky to be able to claim his State Pension and then we had to wait six months before we could claim Attendance Allowance for him – even though his needs had been there from the date of the stroke. The Assessor was very understanding and extremely helpful and processed the claim very efficiently – when it reached him about eight weeks after we filed the claim. My claim for Carer’s Allowance went through within just a couple of weeks which was amazing. Again I had provided the Care for eight months by then and was not entitled to any financial support.

My hourly rate is 45.68 PENCE per hour. How does that lie with the Minimum Wage or Living Wage? I will be very interested to see what sort of response you get by asking the Health Secretary how Carer’s Allowance rate was calculated. I doubt anyone even knows!

We are not badly off, but are living on savings which were suppose to support us in our dotage – OK perhaps I have reached that point already! – so without a ‘decent’ level of support we will become reliant on the State. With the pressure I find myself under, God forbid I should take seriously ill and then we would both need Care which will cost the State a huge sum compared to providing me with some moderate support now to enable me to relieve some of the pressure and stresses I am under.

Graham suffered the stroke and then experienced a range of other serious health issues: Cardiac problems, Respiratory Issues; Prostate Cancer (under control with treatment) which has led to continence problems – and we have to buy some, additional, more suitable pad pants privately as NHS does not supply them), and now Retinal Haemorrhage. I mentioned to you that he is waiting for a Neurology Out-patient appointment at RUH as he is suffering extreme pain in his head, but have been told his initial appointment will not be for at least another year. THEN he will have to wait for any scans or further examinations which are recommended. In the meantime his Quality of Life is practically zero due to excessive fatigue which leaves him unable to walk more than a few yards without resting or even focus on household tasks.

I was asked by CarersUK to keep a diary of a typical day foe me as a Carer and they published it in their Magazine at the end of last year. I have attached a copy (Cost of Care – Chris) as it might give you a further insight into what the effect of Caring can be. They published it under the title “The Cost of Caring” to highlight it is not always a financial cost. Also attached is a copy of CarersUK magazine with an article (Page 20) about me being “thrown in the deep end”. Again if someone has time to read this it might give a further insight.

I am fully aware that ANY Government has many, many calls on finances and balancing a budget is a nightmare – I have done it with a Business as well as our household so I know how hard it can be. However, in ANY Society there is an obligation to provide for those who fall on hard times. I am the first to say ‘get on yer bike’ and make sure you do whatever you can for yourself, but there are times when people cannot do that and NEED help. That is where COMPASSION comes in and it should be the role of Government to have Compassion.

I also mentioned how disgusted I was with South Glos Carer’s Assessment process. They may have a Provider who is contracted to carry out the work on their behalf but under the Care Act 2014 it is the Legal Duty of the Council to carry out the Assessment. They cannot pass the buck to a Contractor. THEY must ensure it is done properly or they fail in the Legal Duty. It is my opinion that South Glos has failed in its Duty. The only comment I got from them was ‘we have had issues with this team and this has been compounded by sickness and holidays’. How lovely that these people can take paid holiday or go sick (and get Sick Pay from their Employer no doubt – what a luxury that must be!) If I go away for a break, I lose my Carer’s Allowance unless Graham comes with me! Is that JUST? Is that FAIR? If I am not there I have to pay someone else (at least Minimum Wage) to do what I do for 45.68 pence/hour. I cannot ‘go sick’ as I still have to do my Care job.

Luke, I have had a loud moan, but at the end of the day WE are not that badly off at the moment. There are hundreds of thousands of people in a worse situation and I want to highlight to you the problems ALL Carers face. If you read the article I have attached, you will see a comment about my ‘vows’. Think back to your wedding to Roisin and how one of you would feel if you were in our situation – I could walk away and be free of the hassle and stress, but I will not. Most Carers carry out our role through Duty and LOVE and all we want is a little bit of recognition of what we do.

I have been asked by CarersUK to take part in a Zoom meeting with Ed Davey in a few weeks time to discuss Carers Issues. It will be interesting to see how he responds as I understand he was, some years ago, a carer for his Mother so will have personal experience of the problems. Penny Mordant has also said she was a Carer when her mother was seriously ill. I wonder how this effects their views? Perhaps I need to contact the local Labour Party office to put the points to them as well.

Thanks again for your time, and I would appreciate your comments at some point.

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Quick bit of history. Carers Allowance started out as “Invalid Care Allowance” and was targeted at single women caring for elderly parents. The rate was set at the “Dependent’s rate” for the main National Insurance based benefits of the day.

When access to the benefit was widened, it was kept at the Dependent’s rate, which a married man would receive for his wife. This made it the lowest paid benefit available, and it has remained there. Admittedly there have been a few times when the increase for carers was larger than for other benefits, but it’s still woefully inadequate given the conditions placed on its recipients.

Chris - feel free to send that text to your MP as it shows that the benefit has always discriminated against carers as it was assumed that “only” women would receive it. It literally assumes that carers do this because they should, and that the government is giving them less than the minimum that is assumed necessary for everyone else.

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Thank you Charles. As I wrote the email I knew I could rely on your knowledge to fill in gaps. MUCH appreciated and I will be sending it on to him.

I doubt anything will happen but it’s always good to rattle the cages of our wonderful elected representatives!!!

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There used to be a “history” of Carers UK on the main website telling how it all started as the Invalid Care Allowance (and who was responsible - a lady whose name I can’t remember now but she was a clergyman’s daughter and as a single woman was expected to care for her parents in their old age). I have had a look but can’t find it now so am tagging @Michael_CarersUK in the hope that it’s still on the website, hopefully he knows where it is and can provide a link !! I know I found it a very interesting read.

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@susieq that would be great if it is still in the archives.

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It’s probably on the old website, which is hopefully archived. The only reference on the current website that I’ve found is:

“Carers UK has a history stretching back to the 1960s when a carer called Rev. Mary Webster founded the first ever carers’ organisation. This organisation merged with another carers’ organisation to form Carers UK. Over the years countless thousands of our members have fought alongside us for a better deal for carers and have helped to lead and shape the charity.”>

But I did find this link: WHY THE STORY OF CARERS UK IS AN INSPIRATION TO AWOC (awwoc.org) and there is a Wikipedia page for CUK, which also mentions her: Carers UK - Wikipedia - and this from 2015 is an interesting read. History of the Carers Movement UK | Carers and Human Rights (wordpress.com) It seems that others are more interested in the history of the carers movement than the movement itself. Sad.

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Thanks Charles - yes, that was the lady - Mary Webster.

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Originally Invalid Care Allowance was only available for men caring for a disabled wife. This was challenged and had to go all the way to the European Court of Human Rights in order for women to get it, I imagine as it was sexual discrimination. At that time I was running a charity for families with a disabled child, diagnosed or undiagnosed. I remember hearing about the decision on the radio, I know exactly where I was, even now. I went to our group and told all the mums that they were all going to get £2,000 each. They all thought I’d finally lost the plot, I think. Later, they all had their money and we had a wonderful meeting where everyone was keen to tell everyone else what they’d spent it on. Mine went on double glazing I think. It’s time there was another challenge in the courts. Why is it that what we do isn’t counted as work, when if someone else does what we do it is work?!

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Thanks @susieq for asking about the ‘history of Carers UK’ that used to be on our old website. I’ve asked our Communications colleagues about this and have been told that the page is being updated and will be added to the new site when it’s ready.

And thanks @Charlesh47 for sharing the page on our founder Mary Webster.

Michael