Hi again.
So mum has a housing inspection tomorrow, and I have to take time off work to help her. I have told the letting agents that there will be a few boxes laying around because she is getting rid of stuff because she’s on the waiting list for extra care. However, there is currently no timescale of when this will be and she intends to stay in the property until such a place comes available.
Its safe to say I am worried thanks to my diagnosed OCD and my brain just thinks all sorts promting me to have all sorts of side effects. It has prompted me to try to call the extra care people at social services who are dealing with this application. I know mum is still on the waiting list, but there is no indication of where she is at the moment because they wont tell me anything even though I am known to the council as mums carer. They keep saying its for GDPR reasons, although I know this is crap because they have told me before.
There was also recently an incident prompting me to call the safeguarding team who prompted me that the best course of action would be to contact the extra care team and ask if there is any movement. I have also spoken to the main social workers this morning who say they do not know.
Why does no one work together.
So far she has waited a year. know there is a housing crisis at the moment, but a disabled person should not be waiting this long when clearly marked under ‘a priority.’ I just believe they are hiding behind GDPR. They know mum needs help to understand things but they are requesting that she calls them instead.
I only had my carers assessment review last week, so it should be fairly known that I am under these services. Its just another hinderance to us carers that we have to face.
Don’t get me wrong I know the reasons why it should exist and the help it brings to data protection and big scale companies, but when it hinders a carer just trying to do their job, it is so annoying. I am literally just trying to find out if there is any movement in a waiting list, I am not asking for the names and addresses of the people ahead of her.
I know it can be a pain at times. Our last GP practice nurses were really difficult about me calling to organise Hubby’s appointments/medications etc. In the end I had him sign a letter explaining that he gave his consent to me having access to his information. Once that was on file it got better, but every time I rang them I still had to remind them that they had Hubby’s consent on file and they could share information with me. No such problem with our current GP practice, they totally ‘get it’ and I’ve had no issues in discussing Hubby’s needs with them. Happy days 
So NHS protocols on sharing patient information, in general, are pretty clear and a lot of the time they fall back on ‘implied consent’ when dealing with carers, which is that patient information can be accessed and shared with the people directly involved in caring for the patient. Which would include informing you of progress., because it would be reasonable to expect that you need to know.
But since you are dealing with the council, the Gov’t protocols for sharing personal information are more restrictive and they will need ‘explicit consent’ before sharing anything with you. It might seem that they are being unhelpful, but they come in for hefty fines should an audit reveal that they released personal information without ensuring GDPR compliance, including obtaining ‘explicit consent’.
So to enable you to be across all of your Mum’s needs you might consider writing a letter from your Mum, confirming that you are her primary carer and advocate, and that she explicitly consents to her personal information, medical information, and all other information being shared with you. Have her sign at the bottom and give copies to all concerned.
EDIT: I forgot to mention that if you need to call them before they’ve had a chance to get the letter, you can pass the phone to your Mum and she can give her verbal consent over the phone for the conversation to continue with you.
And I hear your frustration that no-one works together. Its a huge pain in the bum.
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Hi Coolcar - I have had similar issues with one of our local hospitals meaning I have to get Graham to speak to them every time the call and he is not fit enough to take the call and wants me to deal with them - this is ALWAYS when they are ringing about an appointment as he cannot make notes for the diary or even work out when we are available. So I resort to handing him the phone - he mutters ‘please deal with Chris’ and then back to me. Infuriating when he is having a very bad day and is losing track of what’s going on. I have approached the hospital directly and asked why they cannot accept the POA I hold for him and they replied 'He may still have Capacity at that time and it would over-rule the POA. I the only suggestion they had to make was to have him sign a letter before each and every appointment giving Consent to them dealing with me and keeping me informed. Their argument was that he could refute the POA… Surely he could do that when we are there anyway?? When he is having a really bad day and I need help from them and then I have to get him to try to talk on the phone it makes him feel worse and they just don’t seem to get it.
I understand the provisions of GDPR and the need for confidentiality but when someone is prepared to sign a legal document appointing another, what is the point when organisations can refuse to accept it?’
Oh the suggestion of a letter which would then go on his file was mooted but I was warned ‘but people might not read that letter and ask to speak to him anyway’…
Rant rant rant!!!
Our GP Practice is the complete opposite - they know Graham struggles and so if they ring me it’s ‘Hi Chris, this is Heather at the Surgery, I’m just ringing about Graham’s test results…’ or ‘I need to check something about Graham…’ even the GP starts off ‘Hi Chris, It’s Richard at the surgery, now about Graham…’ If THEY can do it, why not everyone else?
sigh
Thank you. As I say they know I am a carer, and mum has given them repeated consent in the past. The main social workers will directly speak to me, the same as the safeguarding team, the carers and the finance team will, but the extra care people will not. It drives me mad.
Mum has given consent numerous times, but they do not listen. I work full time so I cannot always just pass on the phone to mum. I work 20 miles away too so its not like I can pop home either, not unless I want to pay my rent at the end of the month. I can make a quick phone call, but if I have an appointment booked I cant just cancel it.
In my line of work I understand procedure and the official way to do things. Heck, if I want to contact the police media teams about a particular topic, I can only do so if I have enough information about it in the first place. I cant just ask them willy-nilly, I have to know enough info to ask them.
The same goes with mum, I know where she lives, I know her bank details, I know everything that these people need to know. I can understand data protection, but who is the data being protected from if I already know the details because I am the registered carer as it says on their books. Its like being handed the role of a carer when convenient, but taken away when its inconvenient.
.
Mum needs help understanding information which is written in her care plan, and they never seem to understand this. It also drives me mad because it really messes with my OCD, last night I was an absolute wreck. I am terrified that mum will loose her home over something stupid hence the need to find out about this. I have a thing called responsibility OCD and it can really push me over the edge sometimes and make me worry all the time which leads to compulsions which creates a vicious cycle.
Mum has been vigorously cleaning the house the past two days, so hopefully all will be well. I hope so anyway. I have booked the day of work to help.
The thing is they have been given so much consent from mum, and numerous forms have been signed. I liase with the safeguarding team, the main carers, the social worker, and the finance team who are all quite happy to work with me.
I just think its annoying receptionists holding the gates and not letting anyone through
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I wish everyone would remember that without unpaid carers and those we care for they would be out of a job! And if we didn’t care for them it would cost a fortune for them to be cared for by the NHS or Social Services!
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I was so annoyed when they dismissed my health conditions. It was like saying “what do you have?”
OCD tick
PCOS tick
Anxiety tick.
Anemia tick
“Great let’s move on.”
There was no talks about how the role affects me, like no discussion how the simplest little thing can affect me. No talk of my lifestyle, just tick tick tick, right you are all set.
It’s another example of a Box Ticking Exercise so that SS or LA can show on their stats that they have ‘fulfilled legal obligations’. This fails to take into account how effectively they fulfil the obligation of if it is effective in any way!
As you say, no account is taken of how a Carer is able to cope with extra demands on time or nervous energy. One question the form asked me was ‘how do you see your role developing in the next year?’ WTF ??? I do not want to develop my role thank you - some %$""£ idiot had clearly lifted the questions from a Staff Annual Appraisal form and thought it appropriate. Could they have been more patronising?
Even when I put in a complaint I was simply told ‘oh we’ve had some issues with that Team and there has been a lot of Annual Leave and sickness’ I replied saying it must be nice to get paid Annual Leave and how do I apply for it? Also asked what ‘sickness’ is because I am not allowed to be ‘sick’ due to caring 168 hours a week… Funny, I got no response to that! And they wonder why Carers get frustrated with the ‘system’.
Best thing I can offer is the assurance that you are not alone and can turn to others on here to vent, for advice, or just for a chat.
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Yeah it is shocking. That line is very patronising, and the sort of thing you’d expect to hear at a job interview. It may just be me but it’s also extremely patronising, the use of the word development implies it’s quite positive with progress being made. The thought the role of a carers assessment is to help when things are hard.
I think they also forget what fits into the definition of caring, and how it’s done. I provide a lot of emotional support which is absolutely ironic because nowadays she seems better than me. On the surface I’m a functioning adult, but if someone read my thoughts on a day to day basis then they’d know otherwise.
I realise I’m not the person I used to be, whilst my social skills have got better thanks to my job, in my personal life I rarely talk to anyone out of choice. I’m usually just so exhausted even if nothing has really happened. I just cannot get close to people anymore.
I also think mum has a condition called borderline personality disorder, and it affects how she sees the world. I get a lot of messages about how she wants to harm herself because someone isn’t talking to her or so on, I have learnt to call a bluff, but those words still cut deep. It becomes a thing of responding to fake emergencies because she wants attention or to behave in a certain way.
Honestly I absolutely dread phone calls from her, and I hate dealing with all the crap and lies. But because it doesn’t fit into a boxed category my role just seems non existent. They were quick to ask what I physically do for her, but there was nothing about the mental side.
I do just feel like the assessment was rushed through, and I’m now just seen as a managed carer. But they don’t see the sleepless nights which turn into higher anxiety levels because my brain is tired and needs to rest but it knows it can’t. They don’t see the nights where I can’t keep my medication down because I am throwing up because my anxiety levels have got overwhelming, or the compulsions have got too much.
I can feel a soapbox moment coming on…
Social workers and their managers need a head wobble. They not only ignore the spirit of the law, they ignore the letter of the law. The “box ticking” may trigger a carers assessment on the computer system they use, but frankly I’ve seen very few carers assessments worth the name. And it’s been worse since covid. It’s reached the stage where there’s virtually no point to a carer’s assessment, if you can even get one. And yet the law on carers assessments, if actually followed, could make a huge difference to carers’ lives: and every now and again, I’ve seen it happen.
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@Coolcar98 I am sorry if my comments came across as trying to teach you to suck eggs. I can sometimes go straight to ‘solution mode’ without asking some questions first. I see from your reply that you have done a lot of groundwork to have your role as your Mums carer acknowledged. It was not my intention to make you feel patronised and I am sorry if I made you feel that way.
Given all of your groundwork you really shouldn’t be having the difficulties that you are. Could you maybe find out who is higher up in the extra care team and putting them in the picture about how the teams lack of communication with you is putting your Mums health and wellbeing (and yours) at risk?
@Chris_22081 It sounds like that hospital doesn’t understand ‘implied consent’. I would be tempted to print out the NHS own guide to sharing patient information and send it to them. It’s difficult enough without stupid barriers being in the way 
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I’ve found one or two Consultants are absolutely fine dealing with me - particularly the Urologist who diagnosed his prostate cancer, but G has a ‘history’ with the guy as it was him who saved G’s life 4 years ago with emergency surgery! I think I made an impression when he was describing some possible side effects of the treatment he is on (sorry ladies I don’t mean to offend…!) he said that it can sometimes cause symptoms ‘rather like the menopause’. At that point I needed to reduce the tension in the room and burst out “oh great, if I had wanted to live with someone who has hot flushes and mood swings I would have married a woman instead”. The two nurses present literally fell to the floor laughing, the Consultant said it was the best reaction he has ever known and Graham just looked at me and said ‘ONLY you would come out with a comment like that!’ We’ve seen one of the nurses since and she remembers us and listens and talks to us both as does the Consultant. Perhaps that is what it takes…!
Even PALS told me it is up to an individual whether they pay attention to G having given consent…!
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