So shocked : Well my dad phoned me last... - British Heart Fou...

British Heart Foundation

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So shocked

buddy2blue profile image

Well my dad phoned me last night to inform me that I should be contributing £50 a week to my care. To say it was a shock would be an understatement. Not only that but they want me pay £600 for the care I’v already been receiving. If they think they are getting that then they can think agin. Just to top it off dad said what I go bankrupt and their response was that’s not our problem. I hardly slept last night and my heart rate went to 170. Do they not think I have enough to cope with. I feel really guilty as my parents are also dealing with the back lash. I was laid in bed last night thinking it would be easier for everyone if I wasn’t here. Honestly sometimes these people really don’t know the effect it has on the people who they are supposed to be helping and making our life easier. Rant over and don’t worry I am going to fight this and don’t intend going anywhere.

51 Replies

To clarify, are you saying your parents have been asked to pay £50 per week towards your care+a single £600 fee for care provided to date? Who is asking for this money, is it your council?

I'm shocked as well, I thought your entire care was being covered by the NHS. How on earth do they expect you and your family to find the money they're (who ever they are) demanding?!

They want ME to pay it

Who is it that wants you to pay?

Social services


How on earth do they expect you to pay, are they labouring under the impression you have assets you can dispose of to pay them?!

Good on you for being determined to fight this outrageous demand for money!

It’s to do with the Financial assessment they did. They have now decided I need to contribute to my care. I don’t mind as such it’s the fact I was told I wouldn’t need to pay and they put the care in place straight away and now they want £600 back.

That payback demand from them is plain wrong considering they told you 'no charge' when the care service was put into place. I hope it's resolved quickly, you don't need this extra worry on top of everything else.

Honestly I think I'm still burning about them wanting you to pay anything. They should have been crystal clear from the outset they were going to do a financial assessment and if they found you able, they would be asking for money.

They need to spell everything out clearly - in writing.

They told me when they first came round that they will need to do a financial assessment but said it was just more of a formality and that my care would be payed for

It sounds as though you were deliberately misled, then. Fight, Tori, this change on their part to charging you is wrong - 'Notdead' wrote a great piece of advice below on how to get started.

Please keep us updated on your progress!

Debtyd profile image
Debtyd in reply to Sunnie2day

I agree,it's disgraceful the way social serves work...they tried a similar trick with my late younger brother.offered the care package and when he and my 70yr old mother said that he wouldn't be able to afford any contributions,they said not to be worrying about that as he needed the help and they would arrange the care package to cater for his special needs then a while later said he had to pay money back cos they over assessed his care,even though he was in a care home for adults with learning needs,also he had to pay housing benefit back as he had been paid hb to his self and he thought that it was his money and didn't realise it was for his rent in care home.nibody explained this to him and his learning inabilities wouldn't let him accept it and refused to pay it back lol.if the council had just paid the care home direct it wouldn't of caused the serious stress that occurred as a result of their lack of sensible logic xxx

LaceyLady profile image
LaceyLady in reply to buddy2blue

Do you have a care coordinator? Talk to social services? Citizens advice?

buddy2blue profile image
buddy2blue in reply to LaceyLady

Yes I do

This is totally wrong. 😡

Downright pathetic to expect this. I guess you have nothing in writing to say that there's no charge for care but I expect this was a throw away comment from an 'assessor'. Do you have a name for that person?I've got smoke coming out of my ears now!!!

The sooner you get your new heart and get out of this rotten system, the better.

Lots of love and virtual hugs. Jan xxxx

Maybe get in contact with your local mp and council see if they can help . I find it quiet shocking that they can do this . I’d also make sure that your dad picked up the conversation correctly and that they indeed want this back dated and want to charge you a fee going forward . Speak to the care commission that runs your care system and find out . Also tell them you require their requests in writing from now on . Keep a paper trail of all corespondents with them. Good luck x

Hello :-)

Something similar happened to me and I was never even told I would get a financial assessment OR that I might have to pay towards any support or care

I contacted them and asked for the Manager and I put this to them and asked them where was the evidence that they had ever informed me prior to this that this would be the case

They had to admit they never had told me and they wavered it

So I would get on to them and insist you want to speak to a manager and no one else over this

Also it is not me trying to get you to lie but these people will take any amount they see we have spare so I do my financial statements making food etc that bit higher than maybe I do spend or otherwise they will leave you with nothing so maybe when you feel up to it do a mock one that you can produce if and when needed making it add up you have nothing left once you have sorted your outgoings

Try not to let is upset you I know it is not easy we really do not need this when we are so ill but you will get it sorted maybe your Dad can help you

Hope you get it is sorted soon :-) x

Hi Tori that is downright disgusting, have you not got enough on your plate without some jobs worth pen pusher ticking boxes and coming up with stupid answers. Perhaps they would like you to work down the mines to pay for all this. When I think of all the able bodied people who can work, don't work, won't work, never have worked and never will work getting money for nothing it makes my blood boil. I hope you have the strength to fight this all the way. Get as many people on your case as you can. Good luck, take care. Ruth

Hi Tori

I'm guessing that because of your condition you are getting benefits. Are you in hospital or a nursing home now? If so and not having the costs of buying food at home etc., this could be why they have asked for you to pay £50 a week towards your costs. This should have been made clear to you right from the start. Am I right?

Debtyd profile image
Debtyd in reply to jeanjeannie50

Grr...😬This young lady should not have to pay any extra towards her care costs, no matter what benefits she's on or what living arrangements are.shes always going to need some kind of care plan in place even if her parents are shockingly wealthy tori shouldn't be made to carry all this extra worry on her shoulders..not at all... Tori,I'm glad you finally got it sorted out.I personally think Its quite often the care system needs re assessing and not it's service users. ..take care 💜...xDebx

jeanjeannie50 profile image
jeanjeannie50 in reply to Debtyd

Deb, it's truly a hard old world out there and I agree with you re Tori and anyone who's sick having to pay anything, but fact is fact.

Old people who have paid all their working lives to get their state pensions (young people seem to think it's just handed to them - but no they've paid weekly to get it when they retire), they often have to pay every bit of it to a care home if that's where they need to go. If they have bought their own home they can be made to sell that to pay towards their home fees. If they're in hospital for a long time their pension can be taken from them then too.

Parliament are always discussing changes to the system, but I'm not aware of any going through yet. So keep your eyes open for those election papers that come through the door promoting candidates and it may help you decide who to vote for next general election.


Debtyd profile image
Debtyd in reply to jeanjeannie50

I used to be a senior carer working many years in all aspects of care and the reason I gave it up is because the care system is a disgraceful show of mayhem and yes if elderly or young in hospital for a lengthy time I agree to an extent that you should only receive a minimal amount of care money as you allegedly get all the care in hospital that you need..fed watered medicated and bathed etc etc..and I think every body should make contributions so that we may receive the care we need in our senior years just as we do with our national health service so that we aren't made to sell our family'll get no argument from me there at all...but I am currently talking about adults of a good working age who are unable to work due to inabilities of the body and mind that are very very genuine and extremely vulnerable in many areas...i did indeed receive my share of election campaign candidates flyers and I did indeed vote..i always vote but as you quite rightly say yourself there are no apparent plans in parliament to change any of this and there should be. But then again,empty promises seem to be a thing with general election MPs !!!xDebx

Most Citizens Advice Bureaus have a legal advisor. I have used them twice with huge success.They do not like harrassment and will write your letters for you if necessary.

Definitely CAB is the way to go in the first instance. They also have a specialist Money Advice Service/Benefits, and deal with these type of issues frequently. As is always the case, CAB like most of the Voluntary Services often have a bit of a wait time, but in Tori's situation, once explained to them, I'm sure that they would deal with her case as a matter of priority.

Hello Wardija.Glad to hear from you. I hope all is well with you.They have improved somewhat at this end.

That's great, so happy for you 🙂. I'm fairly stable with all the heart issues, thanks to eventually getting the medication dosage "just right" for me.Psychologically, the lockdown and the "shielding" has taken its toll I'm afraid, low mood, poor sleep and weight gain - partially me (hands up) with some extra unwanted help from of my trusty Bisoprolol 😉. So its onwards and upwards . . .Trying to imagine sitting on a beach in 2022 ☀️🌞☀️ that's what's keeping me going.

Take care, blessings 🌻🙏🌻

Yes tell me about it. I can see the Family these next two weeks then need to shield again

A fluke consultation with a superb doc. at the J.Rad.(not cardio.) suggested Mirtazapine for the depression and i have also been meditating(not usually my scene at all) but the two things got me going in a better direction.Mir. helped with the insomnia and the meditation helped with the anxiety re. cardio. problems. Mir. is one of the lesser harmful sleep. aids and will be easier to wean myself said doc. Good luck with the 2022 hols ambitions.

That's good news. My Cardio team are all at TJR, a fabulous hospital. My GP will not prescribe anything for my insomnia and it shows, it's really started to age me and I was getting mouth ulcers and other minor issues . . . I felt so "run down"When I couldn't take the lack of sleep anymore, I turned to taking over the counter, Sominex, which has helped at least with the sleep deprivation issues.

I was very open with my GP and told her that if she wouldn't help me in a measured, monitored way, then I'd do it myself, albeit medically un-supervised.

My body, my choice, my risk.

It's make a huge difference, cognitively - at least now I can think straight and make informed decisions, and physically my skin and other minor ailments have resolved themselves, and NO I haven't developed a dependency on them as I dont take them all the time, just when really needed.

The underlying cause of the insomnia will not be resolved until a surgical procedure is undertaken later this year, so in the meantime . . #sominexsweetdreams 😴 😴 😴

Take care and keep on keeping well.

My GP is also anti medication for insomnia but the Mirtazipines main thrust is for depression. You take it at night before bed and it induces sleep .So it is not a sleep. tablet as such.It works most nights but occasionally for no known reason it fails to have much effect.If you mood is low you may be able to get your GP to prescribe it .This is how it was prescribed for me. I am on 15 mgs a night but people do take double that.There is no day time tiredness with it.Is your surgery for heart?Mine looks unlikely to happen unless major progress is made in that branch of surgery world wide, and soon.

Sorry, I missed your question in your last post.No, the surgery, if it goes ahead (because I'm categorized as being high risk) is for a full shoulder replacement. Been living with a broken shoulder for the last 18 months. Dont ask . . . 🙄 it's a nightmare.

Xrays now show that my humerus bone is actually detatched from the shoulder joint and according to the Orthopaedic consultant is "free floating" . . .and yes it hurts. Got an appointment with the Surgeon 1/6/21.

What's the nature of the surgery you are waiting on?

It doesn't sound that it's a "run of the mill" type of surgery either.

Why is life so complicated ⁉️

Is your shoulder op high risk on account of the General A and your heart problems?They are now doing epidurals for a lot of surgery where high risk is concerned and where the General A may be the problem.I am not actually waiting for surgery. I do need a tricuspid valve replace. or clips. But age is against me and the lack of general experience in the uk of this type of surgery in older patients .They have not done many of them. Medication is working well at the moment for the other heart problems that are somewhat' less serious' and improving with meds but nothing can be done for the tricuspid valve other than surgery. There MAY be an option at Harefields but I have not yet investigated it fully and my cardio. at the J.R. seems keen for them to do it.....I am less keen because they have not done many 'oldies'.

Hi. Oh your situation sounds quite complex and given the "unknowns" makes it even more complicated, but surely the age is not an issue, if they made it known that it could be an option for you.Sounds like you'll have to do your own research on this. But it's good that you can be kept fairly well on the medications you take. It's exactly the same for me and although there are side effects I'd rather not be having - I'm alive.

Yes, it's the general anesthesia and my heart that's the issue. I was supposed to have a quadruple bypass in 2019 but the surgeon refused due to my other co-morbidities such as being an unstable insulin dependent diabetic for the last 30 years and also having had a stroke in 2018.

He said I wouldn't make it off his table . . So he gave me 3 stents, and the usual cocktail of medication.

That said, I had the Angiogram and Sents done under a full GA. Guess it was because it's a much quicker procedure than a Quadruple Bypass. I was kept in hospital overnight for observation, mainly because of the diabetes, but apart from bruising, I was absolutely fine.

That was for my 1st heart issue.

A year later, now newly registered at the JRH, I was diagnosed with Hypertrophic Cardiomyopathy with blockage, which is basically Sudden Death Syndrome. Bit of a shocker, as it's a genetic heart condition, I never knew I had till I was 58.

So, yes you can see why they are cautious of any major surgeries.

No, an epidural has not, as yet been suggested to me. I will raise this with the consultant at my appointment, although I dont like the idea of being fully aware of what's going on when the surgeon is brandishing his saw and chisel !!!

Other than this BH Forum, do you have access to any other support services, specific to your condition, in your area or online ?

Having heart conditions can be extremely stressful, frightening and depressing and despite well meaning friends and family, most of them don't/can't understand just what it's really like . . . Guess that's just our cross to bear eh 🙄

Take care 🌹

Gosh. Between the two of us we could fill a heart surgeons text book!I have not yet looked too closely into who might want to take me on re. the tricuspid valve op. But the John R are gingerly considering it. not sure i would agree .I think somewhere like Harefields might be a better bet but my cardio. seems to hedging around it all for the time being. Yes I do need to do my own research.I do know there have very few cases done altogether in the uk. There have been a few cases done with younger patients .....I hit 83 soon. The John Rad. Team are very thin on the ground in the experience of this op. My cardio. confirmed this.They would only be able to do a TAVI minimalist job prob. througth the groin and if it' went wrong' they have to suddenly turn it into open heart surgery which they do not rec. I may seek some private advice on who best to consult at Harefields for the op.if the situation worsens .It is quite difficult to find out via secretaries info. such as how many ops any particular surgeon may have done and how good he is.Only one person has ever responded on this site to my enquiries about my possible op. I had a PFO done in 2010 at the John R. and which I had carried around with me all my life, or so they thought.Flew the world, lived abroad for years , had a baby with a tricky birth and got through it. Feel my luck can't last!I do have a supportive son and husband on my side so very lucky. .The recent depression knocked me for six but with luck it is becoming history .

A friend just had her hip replaced last week and had and had an epidural and sedation and another friend had a knee replace. with an epidural. They are also begin. to do them for the upper body whereas previously I believe it was for surgery below the waist.

Take care and keep taking the tablets!

P.S The only prof. support I have is the practitoner nurses of my cardio. who do/do not ring back quickly depending on 'their work load'?A group did set in in Chipping Norton but it is miles from me and I do not have a car now.Are you supported by your cardio. nurses or any other group?

Yes, I can say that I'm now pretty well supported, heart wise. I only got registered at the JRH early 2020.

As that's when I returned to the UK. I'd been living overseas for many years. But after the stroke, then the HA and the stents, and finally the fall that broke my shoulder, I was persuaded by relatives to come home and get my health issues properly attended to.

So here I am. At JRH I have 2 consultants, 1, for all related to the arteries and the 2nd is from The Inherited Heart Condition Department, for my HCM.Their respective secretary's are very good if I need to speak to either of them, they do always get back to me.

The Cardio nurses at the Hospital are also very supportive if I need help or advice.

In my local community, I have a nurse who visits weekly - checks my blood pressure, weight, diabetes etc. and she liase's with my GP and Physiotherapist.

So I can't complain, there's always someone I can call.

Locally, I live alone plus small dog, in Gloucestershire, south of the Cotswolds but there seems to be nothing here in terms of socio-health or support groups. I'd have to go to Bristol or Cardiff for that. I do drive but it's a bit of a trek and especially when I don't feel great.

But that's just how it is for me now, very hard to accept some times, I just want my old life back but sadly that's never going to happen.

But like you say, keep taking the tablets (and my Insulin) 🙂 Worse things happen at sea . . .

Oh my goodness how horrible for you. Pain is so v debilitating. I am so sorry.

Thank you for caring and reaching out to me. I do appreciate it, bless you 🌷🙏🌷

Try essential oil of lavender on inner wrists before you go to bed which has the added benefit of lowering bp.

Thank you 🙂

The Social Services and so called care in the community stinks in this country. It’s underfunded so it’s all about money rather than real care. It is disgusting.

I’m sorry you’re even having to think about it, Citizens Advice sounds like a good idea, let them fight on your behalf.

Really hope they sort it out.


Get in touch with citizens advice and get some proper legal advice. It's possible to get this without any payments. If its their error cannot ask for back payment and definely not as lump sum. Due to stress caused they can themselves be liable as this is not of your doing anything wrong, but their mistake. Hope this helps. It works as they don't think of consequences of their actions and most people get scared and stressed without having knowledge or access to find out there rights. Your strength is youve not mislead or falsely claimed it is their error. Take care and don't let the system put you in a bad place.

It’s one part of the system claiming money from another part of the system. If you are receiving benefits relating to your ill health from DWP for care and enhanced needs then the DHS are claiming that money from you. Of course, the system could be organised so that the money goes straight to DHS, but they want to give the illusion of choice so give the money to those requiring care. The problem occurs when, as you were told, people are under the impression that their care is ‘free’.

That’s my understanding anyway, but it is unnecessary, upsetting and confusing.

Do you not qualify for continuing health care where the NHS pay for the care?x

Yes I do it’s sorted now xx

When you say "it`s sorted"do you mean the demands have been withdrawn Tori?xxx

I wonder if you should try and appeal as it is wrong . my Mum years ago in her 80s after a stroke had benefits given to her including care 3 times a day she was registered blind so could not go out to spend any of it , then after few years she had to contribute towards her care but she was late 80s by then , I assume you are younger sorry if sound rude asking your age , but it's not right .. Sheila

Oh dear what a very stressful time for you and with the health challenges you have to face every day this must be a nightmare for you and your family. Help will be out there and I’d suggest, like a number of other members on here, get in touch with the Citizens Advice. My husband used to work with them and he says this is exactly the kind of problems they can help with. Get support, we are all behind you, this is a disgraceful situation! Keep us posted. Sue X

Of corse I will do xxx

I had a friend recently needing care following a spell in hospital and was placed in a residential home on the NHS. She then had 6 weeks of carer support for free but was told , after that she had to pay. Her son is now her carer and gets an allowance. Sometimes, we can get support from one pot / department to offset the costs from another. My Heart Team have helped by explaining some of this to me about my own circumstances , and I am very grateful. Thinking of you and hoping you get the advice and support you need.

This is very complicated. I take it you get all the benefits you can? Higher-level mobility - money to pay helpers, etc. I think perhaps a review of what you get and what you are asked to payout. I know nothing about NHS/Council care at all but if it has been paid in the past and they now wish to change it, then clearly there are underlying issues - cutting back is one issue that has hit so many services purely because the money pot is almost empty. However, in the first instance, I would write a short letter to them asking just two questions. Why am I being treated differently? Please point me to the statute that allows you to do this to me?

Then wait for the reply. If you get the information back then a trip to citizens' advice would be the next place to go. Please don't worry, and stick them out! Good luck

So very sorry you are being put under this stress xxx nothing is worth making yourself feel worst x big hug xx

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