Today is an angry day for i have let rip at social services and their assumption that we MUST pay for all David's needs,its an absolute disgrace,and then a doctor called a few minutes ago and i let rip at her too,and told her i have lodged a letter with a national newspaper to be published should both David and i die,David through his cruel illness and me through stress and anxiety and worry.
The council has a panel who sit around a table and decides who gets help,and i told them they should send the bloody lot of them to spend a few hours watching what i have to do for they hav'nt a clue and dont care a damn ,although yesterday a guy who liaises with different departments paid a visit and he was shocked at all I have to do ,and he said ''I have seen enough,you are doing above and beyond what anyone can do''
We filled a 20 page dossier for CHC and the woman said without a doubt you will be getting more help,but how wrong was she.
Another social worker phoned today and said she would like to come and suggest different types of aid available ,but she said,of course you must pay,so i told her to stay away and dont waste my time.
I told the doctor i advise anyone to never work and never pay taxes ,for then everything will be available and paid for.
i am beyond angry in fighting David's corner and getting nowhere,it should never be like this,David served in the Royal Navy for most of his working life,defending Queen and country,and he worked some very dangerous missions during the troubles in Northern Ireland,and he has ended up being shate on.
There is no justice in this wretched country.
PS/ it did'nt help that the doctor who called hates dogs and insisted i put them in another room,she was paranoid,poor snowflake.....and that set me off in a tangent big time,not a good start i can tell you.
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secrets22
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Rant away if that helps! I'm so sorry to hear about your situation. The System isn't fair and there should be more financial provision. It must feel like you are being penalised, when all you are doing is trying to keep your head above water whilst doing an amazing, but exhausting job caring for your husband, and earning money to pay the bills. Are they any family members you could call on for help if only to give you a bit of respite during the week?
I'm sorry but I don't know what to suggest practically, other than speaking to your MP to see what he/she can do. Many years ago, we had a problem over benefits that were suddenly stopped, and it was only through the intervention of our MP that it was reinstated. It may help. If I think of anything more helpful I will pop by again to share it, it maybe that one of our MAS Nurse Team may know something I don't.
Be gently with yourself.
MAS Nurse and Moderator.
PS. I've been internet searching and it may help to look at this info:
It is so unfair. We are supposed to be in a sophisticated society but we struggle to get any help. So much public money is wasted but the more vulnerable people are losing out big time.
Surely the first law should be protect the vulnerable.
What a disgrace that a person who has worked for one of our armed forces should be treated this way.
Not just armed forces - any job. I serve the country as a nurse. I do not work for the armed forces, never have and never will. I get far less than anybody who has worked for the armed forces I can assure you. Far less in pension rights one day too as I have predominantly worked as a nurse in private sector nursing homes.
I suppose a lot of us have worked in jobs where we have served the public well but members of the Armed Forces can be called on to put their life in extreme danger so I firmly believe they have earned extra privileges.
I disagree. I save lives at every opportunity and my job does not offer such good pension funds, charitable links or any sort of benefit whatsoever. In fact, it is one job in Britain which is in crisis because of the little it offers. 40000 have left nursing to date and by 2025 another 42000 will have deregistered. This is because we are completely understaffed, not protected and treated like dirt as well as being very poorly paid compared to many other first world (and third world) countries. I wish I had worked in the armed forces. I would have some excellent benefits right now.
I am so sorry about your situation. I don't think some professionals realise how mentally and physically demanding it is to be a carer. We just managed to get some help for dad as my mum at 82 and riddled with arthritis , was doing the lions share. We helped all we could but can't be there 24/7 and thanks to the increase of the pension age, I am still working when I should be able to help mum more. Its a harsh country to live in when you need care as an elderly person.
I think the suggestion to contact your MP is good. Perhaps invite them to join you for a few days to see what you have to do!
Even though I am a part-time practising adult nurse and a full time carer, I still don't get how the caring role is so difficult. And I'm in the game!! It is the hardest job I have ever had to do and one that is thankless and completely underpaid. Come on, we earn less than a tenner a day as carers on Carers Allowance. Unbelievable. But can you imagine if the government had to pay carers a living wage or even national minimum wage? It would be bankrupt overnight. I don't know the solution. I cannot even begin to think of one, but it is all wrong somewhere.
Oh secrets, my heart goes out to you and the injustice of it all. I too am angry and agree with MAS_Nurse, contact your MP, national paper and Uncle Tom Cobbly and all.
I wish that all the money that DoLS spent on going through the Court of Protection because my late mother in law wasn’t happy at the care home for a while, could be given to you. Money was wasted on solicitors who just saw Dot once and decided they knew what was best for her! Very stressful and upsetting.
I do wish you well and please look after yourself too dear lady. You are amazing. Xxxxx
I know this isn't a great help but, as someone who volunteers with the Royal British Legion in southern Spain, I believe that both they and Help for Heroes could offer support. Sometimes it's financial other times just ''having the rant'' type support or getting advice
Your situation sounds intolerable and you can lose nothing by contacting them
Look after yourself
Ann xx
Hi secrets22,
First of all, I'm so sorry, and no wonder you blew! Really a rant is essential when all else has failed you. It's the pressure cooker lid that steam has to escape through, before the pot completely explodes.
MAS_Nurse has compiled a good list of organisations that might be worth exploring, but I'd add to that all of the Armed Forces charities which may be willing to help with costs incurred in caring for ex-service personnel. SSAFA is always a safe bet, if only to direct you to the right sort of help, but I've also found what might be a useful site to search for others. It's the Directory of Social Change, (dsc) Armed Forces Charities, to be found at
I know it shouldn't ever have to come to this, but when you hit a brick wall in the way in which you seem to have done, it might help to get a listening ear from those whose job it is to help ex-service personnel. It's marvellous isn't it, how we are told they are now a priority for treatment and help, but here you are at the sharp end learning the hard way that this is not true.
I hope you feel a bit better for your rant but of course what you really need is action to help you. I hope you manage to find it! Very best wishes.
I know exactly how you feel - went through the same trying to get NHS continuing care. - or any other sort of help. Your best bet is clearly any organisation which deals with ex services as they seem to have more room for manoeuvre. At least you were told in advance that all help would have to be paid for..I had a whole afternoon wasted by a social worker who announced that In my circumstances I was most certainly entitles to two months respite care each year. She then said that firstly I would have to pay for it and secondly I would have to accept their choic od what was available and thirdly it might well cost me more than paying privately. I could have killed the silly woman. I am a potterand my favourite way of getting rid of seriously bad stress is to beat the hell out of a big lump of clay. No help at curing the problem at all but it can make you feel a lot better.
It is all much harder if your family is not near and people find it hard to imagine such a situation. Friends are marvellous but they are not usually available at night and there are personal care jobs they really cannot be asked to do .
This is a good place for a rant whenever you need one but help is much better so I hope you get some
Hope you feel better for letting off steam, but on a more realistic point have you tried SAAFA for help as your husband is X forces, even if they can only help you get your rights without hazzle. They can sometimes direct you to areas of help also. I understand your distress as a disabled person living alone I too often feel frustrated with the system and the fact we have to keep paying for all help, I hear our local Age UK has put up care costs to £17.50 an hour. How are people on low income / pension supposed to manage. Hope you have a break through in your quest for help. Even volunteers are giving up caring as they often have to pay out of their own pockets to help people, what a crazy world we live in.
I can positively agree with you on the ranting and raving. I have had my sessions too, with numerous departments and services. It is also too complicated and I am only just starting to look at this NHS continuous care and social care side of life for our future and my disabled husband's future and his needs. It's a minefield out there and one I don't wish to tread on, but we all have to stare it in the face and deal with it as we'll all be there one day. I have looked at this caretobedifferent.co.uk site and it is very good, albeit a lot of reading. Have a look at it when you feel up to it. Now may not be the time, but soon you will get your armour on and soldier on again as we do, us carers.
I know exactly how you feel as been in a similar position, my husband fairly well compared to many with dementia but it is still tough being a carer and losing the freedom to do your own thing even if only once in a while. We too were told we would have to pay for everything and I also,lost it with Adult social services when asking for an assessment and told we couldn’t have a visit for. Occupational Therapist on,y someone ‘trained’ from Age UK. If I had my life over again I would,spend my money. I did speak to our MP with little to no effect, in response to my criticism of pay,nets to asylum seekers getting an allowance and housing was told that they were under stress and not to believe all we read! Take care, we are all with you on this.x
Thank you for your angry vent I am glad I am not the only one who feels the care system is failing us massively. I thought I was the only one who got upset with doctors. I have been told no point in getting cross but I represent many people who technically are disabled including myself and totally reliant on freinds & family in a crisis. In fact my last reveiw of care needs was made about 12 years ago. Carers are being expected to do the job of social services,doctors, appliance services, ambulances . I accept the services are bogged down at present and appreciate all that they do but something has to give in cases like yours and there are many of you. My mum said the community care would never work and was not cost effective I think people like yourself show she was right. The system is failing the most needy and as for paying for things some of that is way out of reach for most people on benefits as care cost £17 an hour from AGE UK and disability payments for living needs in most cases only pay for around 3 to four hours care, there is not enough left for other needs like gadgets ect. What we do get is helpful but in no way meets the cost of care for ourself in the community including carers needs does it?I hope you feel a little better having vented your anger at the system. We cannot move forward for now but we still need to keep argueing or nothing will change in future. Good luck with getting some help and remember there seems to be plenty of money for paper advice , media coverage ect but very little on the ground other than willing volunteers like yourself who love their family and care about others.
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