Hello. I am my wife’s carer - unpaid, and often ring different establishments on her behlaf, but more often than not I have to wake her up to get permission. Is there an offical dicument, offical badge or the like so I don’t have to go through the process each time with each company?
Hi @Jon1089, welcome to the forum. You need power of attorney but you need both parts. You can do it yourself online or go to a firm or a solicitors.
Are you aware of DWP’s Appointee scheme? Quick and easy to claim.POA is the best long term solution. Don’t forget for someone to be your own attorney too! What sort of organisation is most difficult?
Hi @Jon1089 I have similar problems. I have LPA for Graham, my husband, but he still has Capacity so that cannot be used automatically.
We’ve had issues with receiving calls from hospitals and others and, like you, I have to explain to G who is calling so he can just say ‘I authorise you to speak to Chris’. I took this up with one hospital who said the could not accept LPA until G loses Capacity but if he wanted to have a letter of authority on file they would see if that could be put o his records - HOWEVER - they were not sure staff would see it without going into the details of his Notes!! Therefore, it would be useless!
The problem we have is G’s short-term memory issues following his stroke. He always prefers me to deal as he cannot sort out the diary or talk in detail about matters without getting VERY tired and sometimes confused which is no good to the person calling.
I wonder is there anything @Michael_CarersUK can comment on? OR is it something CarersUK should be addressing with Authorities? There are many people who have this problem.
1 Like
Yes I am in the same position. Husband mega deaf and even with speaker phone on has issues hearing. GP Surgery actually quite good - they have asked me if I have ‘authority’ and seem to accept what I said which was ‘if it is making routine appointments like blood tests et al then yes, but if you need to talk to him about medication issues or test results then HE needs to hear what you are saying too’. Credit card problems are an issue as they are all in HIS name but again even getting him through the security check is an issue as he does not do any paperwork relating to money issues so I have to prompt him. He has put things through on credit cards in error - buying an online magazine that he thought was hard copy but was in fact digital and he could not download on the computer or doing a trial of software not liking it but letting payment go through. I got this reversed but in fairness he often does not check his emails or spam. In fairness Amex and Barclaycard have been very good dealing with me. Thankfully bank accounts in joint names. Utility bills now in my name too.
I do not think my 85 year old husband would give me POA
Thanks all for the feedback and support
Hi Chris. Thanks for highlighting this issue. For your specific situation I would suggest that you contact our Helpline at advice@carersuk.org and one of our advisers will let you know if there is anything else you can do to make it clear to health and social care professionals that your husband authorises you to speak for him.
You may also find the information on ‘Managing someone’s affairs’ helpful on the Carers UK website:
https://www.carersuk.org/help-and-advice/practical-support/different-ways-of-managing-someone-s-affairs/managing-someone-s-affairs-england-and-wales/#:~:text=There%20are%20two%20types%20of,medical%20care%20and%20social%20care
We also have a video recording of a Share and Learn session focused on Power of Attorney which you can view here:
https://www.carersuk.org/help-and-advice/your-health-and-wellbeing/online-meetups/share-and-learn/share-and-learn-videos/information-and-guidance/
I hope this helps
Michael
@Michael_CarersUK Thanks for the response.
I am aware of using LPA and we hold them for each other for F&P as well as H&W. I’m not quite sure you grasped the problem. The issue comes because he currently has Capacity but has short-term memory issues and cannot always hear clearly when someone telephones, or gets confused because he isn’t certain who is calling or why. He is also unable to deal with our diary himself following his stroke as he is slower with comprehension and has manual dexterity problems. I attend all his medical appointments and have to liaise with medics and others both in person and on the phone. This is fine when they know me - any by now many do and respect the reasons for me being the contact - but when someone is unfamiliar with Graham or me is on the phone or even with us, we have to go through the rigmarole of Consent even though G starts every meeting with ‘This is Chris, my husband and Carer, please talk to him as if to me.’
I approached a local hospital after several problems with staff refusing to speak to me – even to move an appointment - and was told that while Graham could write a letter to go on his file - most staff would not read the letter and they have no way to indicate on the front of his Notes that I have his Consent! They admitted that it probably would be a waste of time.
After having had the phone slammed down on me twice when trying to rearrange an appointment i called back and spoke to the same person and just said I was Graham and she dealt with me with no further check than asking “my” date of birth. Whilst she was probably just a miserable “jobs-worth” there must be some way of having my details recorded to be a prime contact!
Has CarersUK not encountered this sort of problem before?
1 Like
@Chris_22081 It would be a miracle if they have not lol
I am mega lucky as the deafness is such an issue that the staff at Es Surgery seem to be ok to deal with me. Last phone call lady was new and asked if it was ok to speak to me. I said yes if it was about arranging appointments but NOT if it was about discussing results as I needed him ’ in the loop’ she seemed ok with this . The whole ‘mental capacity’ thing is a nightmare and I am surprised Carers UK are not doing more to progress some kind of review. Carers are left to try and provide a safety net when someone is considered to have ’ mental capacity’ when it is obvious to most that they are not just a danger to themselves but to others.
1 Like
You are in a much worse situation than me as E manages to convince people he has Capacity. G DOES have Capacity but realises he has short-term memory loss and concentration issues (nods off suddenly as he gets easily exhausted) so he asks everyone to deal directly with me…
1 Like
Hi Chris. Thanks for the further explanation. It sounds like a Carer’s Passport would be helpful so that you don’t have to explain your situation to each new member of staff you encounter. You can find more information on these here:
https://www.carersuk.org/help-and-advice/guides-and-tools/what-is-the-carer-passport-scheme/
This page also includes a link to the Carer’s Passport website. I would therefore ask your local hospital if they have a Carer Passport Scheme. If they don’t, you could share this information with the hospital and ask them if they would consider introducing one.
Hope this helps.
Michael
Thank you Michael - but again it is not about me recognising that I am a Carer or explaining to someone FACE TO FACE - it is about the issues of telephone contact in the main. Our GP has a note on the front page of G’s records that I am his Carer (although every member of staff knows us - I THINK that’s a good thing!) and every member of staff will speak directly to me. If a GP surgery can do this, why can a hospital not do something similar.
The Carers Passport seems OK but you are suggesting that I should push the hospital to set up a scheme - please tell me, when do I have time to do that? Graham is just home from eight weeks in hospital and rehab and needs 18 hour a day attention til he is fully mobile again.
If CUK has been ‘developing/promoting’ this, may I ask how many NHS Trusts they have approached to provide information and encouragement to set up the scheme or are you expecting Carers to do that work? I see from the website that it is intended to help people set up a Passport Scheme in their Community. Surely this isn’t something which should be left to individuals?
I am sure you will think I am being awkward, but I am fed up with the number of times I have had to wake Graham to speak on the phone to some person who will not deal with me even when I say ‘are you calling about the appointment which is due to be made for him for X Y Z at Uro-Oncology at the request of Mr Smith?’ proving I have intimate knowledge of his medical situation.
By the way - when I approached the hospital, it was the PALS service I wrote to and they were the ones who said even a letter on file would not be seen by every department or most members of staff - they did not mention anything about Carers Passport.
Does anyone else on her ehave good knowledge of how effective it has been for them?
1 Like
@Michael_CarersUK @Chris_22081
2 things that firmly established me as Mum’s carer (apart from the recent debacle with the centralised Antivirals eligibility system that is separate from GP, and other healthcare services and council services)
This is not going to be helpful suggestions just a reality check I’m afraid - perhaps just for my our corner of England but worth noting
- Having LPA - finance (and not even health PA) and doing probate for my Dad, transferring things to Mum at every financial and utilities and house related organisation, and in turn putting myself, my email and contact details on everything.
- Over time, doing ALL the admin and putting everything into ‘vulnerable priority’ listing for water, gas, electricity and pushing every emotion button between bereavement department and vulnerable departments
I have myself down as the main contact for electricity - because I needed a utility bill and to claim this address as my residence when I moved out of my own flat. There is no tickbox for not my house, not renting, on forms these days
Re. Carer Passport - I’m sorry but this is a double hurdle. Trying to set up a local scheme no one knows about to then raise awareness of carers is trying to make people care about something that don’t know IF they want to care about.
In our area - the council and other organsiations ‘claim’ to support carers ( macmillan nurses have actually DONE things for us e.g. helped with attendance allowance and blue badges waaaaaay back when)
BUT really any support is a lot of lovely talk with limited to no resources, available in the area The help is very limited specific transactional support at specified times. Carer support circles back to the agencies for hire that I already researched. I did the big circle of being led down the garden path, only to have the real action default to what I’d already established myself
To come back to being identified as a ‘carer by organisations so that we can do things on our loved one’s behalf’
The biggest hurdle is that EVERY organisation has specific security checks and balances to go through. In probate there is a one-time tell everyone thing but Not for enabling carers to help loved ones…I guess this is because ( as always) people are more likely to assume the worst fraud, theft, security issues INSTEAD of truly understanding what we as carers need to do daily to make our loved ones, safe and all the house, finance, etc admin run smoothly! There’s no easy one time process. It took time for us.
- the main turning point for me was using Probate and the fact Mum was going through chemo at the time, as the ‘Talk to me’, if we’re registered in the ‘Vulnerable’ priority listing and me as the carer, repeated a few times, the message eventually gets through…
Our situation is perhaps a little out of the norm as I run everything 100% myself because whilst Mum is still competent the continuous cancer therapy since 2020 has reinforced my ‘status’ as her carer…
Helpful not helpful info, just some thoughts
1 Like
Thanks @Victoria_1806
@Michael_CarersUK I just saw that the CP was trialled in North Bristol NHS Trust - one of our local ones. When G was admitted in August I checked the hospital website for help. I found a number for PALS Carer’s Liaison Officer and went to their office to find a large notice “NO ENTRY - Telephone appointments ONLY”. I found anumber for the officer and rang to get a voicemail saying she was not on duty and leaving her post at the end of JULY (this was mid August) and referred me to another number. Rang that one and got a vocemail saying ‘not in this week, ring my colleague…’ yes - the person who I had tried to call and had left the post. Rang Carers Support Centre never heard back.
The CP website states NB NHS Trust offers open visiting for carers, reduced rate meals in staff canteen, parking concessions - no mention of the fact you have to register for this IN ADVANCE with the ward and then commit to 4 - 5 hours giving personal care every day. The staff canteen is NOT subsidised so you have to pay full cost - although I will admit it appears it is a quieter area to eat. Have to register a specific vehicle to get parking concession and then a space is not guaranteed (at an 800 bed hospital with several thousand outpatient appointments every day - with less than 500 cap parking spaces… There is also mention that the patients is asked on admission if they have a carer and would like that person involved in decisions and care. Graham was NEVER asked - we had to keep telling every member of staff each time - eight doctors over 16 days and goodness knows how many nursing and HCAs. So a great idea - ON PAPER - but it is not put into practice. I know its something that needs taking up with the hospital but I haven’t the time or energy - it just galls me when websites bleat on about wonderful practices which are just not followed.
If CarerUK wants to support Carers that is an area which could be addressed. No-one wants to go into hospital and few of us Carers want our loved one to be admitted but it happens and then we are left struggling to fight our way through red tape and ignorance of our situation.
Two prime examples - Graham is opposed to Blood Transfusions. It was not recorded on his notes EVER until I insisted on seeing a doctor write it there. He had mentioned it on admission and then when he was transferred to ward. Also he was due an injection for his cancer - I raised this on my first visit then every day after that - he eventually got it the day before discharge to the rehab unit - after I had said I would physically prevent him being moved if they did not arrange it and they would have to have me arrested and they would then have to endure the publicity of me telling the media they had ignored his cancer treatment. WHY do we have to fight in this way all the time? No wonder I am exhausted.
Carers UK website has this banner:
" We’re here to make life better for the 5.7 million carers across the UK."
Come on…
2 Likes
Firstly please do not get confused with my username which is very similar to Chris 22081 and I totally get where he is coming from.
This is a subject that I found very very frustrating and upsetting. I have had a Carers Passport for 3 years from Devon County Council, it is full of good words and to be honest it is totally useless with the NHS. My wife has a number of health problems, but the main one being advanced dementia, she is unable / unwilling to use the phone and despite telling our local hospital and GP practice this and providing a copy of her LPA, they still ask to speak to her when they phone regarding appointments / results. I find it so upsetting to explain each time that no you cannot speak to my wife, she has dementia and she will not understand what you are saying, will not remember what you have said and as for answering security questions ie date of birth forget it.
It appears to me that whatever IT system the NHS is using, either the system does not retain the right information or the person phoning has not bothered to read the appropriate section. When my wife was last in hospital I lost count the number of times I had to repeat myself to DRs and nursing staff, regarding my wife’s conditions and medications, life is stressful enough as a carer, without having to continually repeat myself.
I believe this is a nationwide problem requiring a nationwide solution, I get so tired of governments of all colours, councils and NHS all saying how important carers are and providing the smart words of support and yet they cannot solve the problem of identifying a carer.
Oh Chris - I think you and I could have a lot of fun confusing people and teasing them on here!!! I am sure there are some who would agree it wouldn’t take much to confuse them.
I am pleased that you concur with my comments. It really is galling to have to constantly go over the same things time and again. In your case there is absolutely no excuse as, if your wife has advanced dementia the LPA in in force no matter what - so they should automatically be dealing directly with you.
From your comment the Carers Passport is not worth the paper it is printed on. Perhaps @Michael_CarersUK you’d like to note these observations.
I have reached the stage where, if G goes into hospital, I have papers printed off - Copy of LPA, Advance Decision, and a letter signed by him confirming his Consent to deal with ME over all matters to do with his care and treatment. I have a copy on me as well as the one in their file so I can hit them over the head with it when they can’t be bothered to read their copy. It’s so wasteful let alone time-consuming. The ONLY place I found to be different was the Rehab/enablement Unit he has just been in - THEY immediately welcomed me and involved me in discussions and even asked if I could visit early one day to join a group discussion on his care and progress. THAT was without prompting and it meant so much to us both. A simple act but something meaningful.
Thanks Chris and Chris for sharing your frustrations with the Carer’s Passport scheme and your interactions with health professionals. I’ll pass this feedback onto our Policy and Public Affairs team.
1 Like