I’ve opened this as a new thread as I am not certain where it belongs.
Hubby G has gone ‘through the mill’ in the last couple of years as many will be aware. Recently he was referred to Neurology due to some memory issues and ‘minor’ cognitive problems. He was seen by a Specialist Cognitive Neurologist who was wonderful and sat allowing HIM to talk without her having any preconceptions about what he needs. That resulted in him opening up much more than he has done before with medics. At the time I found it quite emotional to hear him being so open with no prompting.
At the end she summed up his ‘issues’ succinctly and said she believes he needs to talk to find closure on a number of matters and we’re waiting on contact following self-referral and she also asked G to back up his referral as she did not want him sitting on a waiting list for months on end. We have been waiting for over a week for a call from the agency which deals with these matters - they states they will be in touch within 2-3 days!
However, on Friday a letter arrived from the hospital. They had run a series of bloods tests - checking for any deficiencies and also test for other indicators. One of these came back positive and they want another test to confirm as it is possible to get a false positive. Please don’t jump to conclusions - it is not HIV…
However, the problem is that this stems from an incident years before we got together and the request for second test has acted as a trigger bringing back terrible memories for him. As soon as he mentioned it I could see his mood change and had we not had our friend staying this weekend I fear he may have gone into a rapid downward spiral.
Thsi morning our GP surgery rang and at first would not speak to me (G was on another call from his uncle at the time) but I said I keep our diary and initially they said a “routine blood test” then when I pressed they mentioned the hospital letter, so I then knew exactly what it was about and told them so. I warned about G and what had happened when he read the letter and said I need to talk him through it first. The Receptionist agreed and I rang back a bit later and made the appointment - this time it was a member of staff who knows us very well and as soon as I told her she understood the problem.
I’ve chatted it through with G and it is likely that the problem is a false positive because there will always be a ‘marker’ in his blood which makes it look like an infection is present. What I have to do is keep him calm and get the medics to deal with it appropriately and try to stop them raising it as an issue with him.
I’m upset because he is upset and I need to work out the best way to communicate this to the hospital.
@Chris_22081 I think it’s worth chasing the appointment for talking therapy with the agency. The trauma being revisited by the blood test adds weight for the urgency of the referral. If your chasing doesn’t help could you ask the GP and/or consultant (or consultant’s secretary) to chase too?
Re the blood test - is this being done at the GP surgery? Our surgery has a visiting phlebotomist. Could the results be given by the lovely GP rather than the hospital? If the result isn’t a false positive and treatment is required, will that have to happen at the hospital?
Just a thought: talking to the hospital it might be worth explaining that the issue under investigation currently harks back to a very traumatic time in G’s life, and he needs to be treated sensitively - refer them to the Cognitive Neurologist, who it seems heard quite a bit about his issues and has tried to get him talking therapies. Perhaps it would be possible to ensure that any further issues around this are tackled once the talking therapies are in place?
It’s at our GP surgery tomorrow lunchtime and I explained to the lovely Receptionist what has happened and she said she would put a note against the appointment to make sure that he is handled as sensitively as possible. I know that will mean kid-gloves!
I was thinking or ringing the Consultant’s Secretary tomorrow and asking if a note could be passed so the nice lady is fully aware of what’s happened. That may prompt her to hit a panic button to get someone moving with the Talking Therapy. She has already said he should not be hanging on a long waiting list.
The issue is 99.9% certain to be a marker from an old infection which apparently stays in the blood and shows up on these sort of tests but doesn’t mean it is a current infection. There should be no need for any treatment for this. It is merely (!!) its acted as a trigger to an old major trauma.
Results will go to GP but hospital want to know when the test is done so they will pick up results as well - so tats a lead in to passing a message!!
@Chris_22081 I like that idea of ringing the Consulant’s secretary - based on the consult she understands and can push as necessary without YOU having to explain it all, or be on the phone explaining with G in earshot…
Sending lots of empathy and support to you both and hope Buster is giving & receiving hugs - they are the BEST dogs for love-support, therapy!
Yeah I have checked the number for the Secretary and got her name so I can make the call this morning to brief her so the Consultant is alerted to the potential issues. She may well be able to push the Talking Therapy - although I don’t want her to panic and assume G is in danger of self harm as he isn’t.
Sent an email to the Secretary and had acknowledgement and copied in GP so everyone is aware.
G had his blood test and was in a bit of a state - told me when we got home he had been very upset by it all. Nurse was lovely as she’d been warned in advance by the lovely Receptionist I spoke with yesterday - so she didn’t even make reference to why it was needed. Poor G even asked me later if I thought she knew - I said ‘of course she did she will have seen the letter from hospital - its just she knew better than to mention it’. That’s all he needs to know.
Chased up Talking Therapy - guess what - he’s on a waiting list.
I asked if they could give an idea of how long the waiting list is…
wait for it…
…
…
FOURTEEN (yes 14) months.
Words don’t just fail me - there are no words. In the meantime ‘just get on with your life’ is basically the attitude they are taking., She even told me that ‘doctors seem to think they can move someone up the list my saying its urgent but it doesn’t work like that’…
Excuse me while I talk this person down from the railway bridge because the people who are supposed to help refuse to speak to him!!!
Whiskey Tango and a lot of foxtrotting
Do you have other options that you’ve identified locally that can start sooner…knowing you, you’ve thought of a plan ‘B’ and at least through maybe to C and D?
Yeah I am growing more and more angry as days go by.
Please explain how Graham is supposed to work from home when he has difficulty holding a conversation for more than five minutes, his manual dexterity is such that he cannot put his own tablets into a pot to take them, he usually only uses one hand to eat and drops food down his front at almost every meal, finds it hard to hold the phone… Oh of course he can earn a living at home. And perhaps they will supply razor blades or an extra fist full of tablets for him when he breaks down completely and tries to find a way out.
Just had a visitor who mentioned the Autumn Statement and was shocked when I told him what the rate of Carer’s Allowance is. He said ‘you can’t live on that - but surely you get a full pension early because of it’. He was more shocked when I said CA stops when I get my state pension in 5 years but still have to do the caring role. More people need to open their eyes to this.
Just wondering if you have heard of or been in touch with your local CMHT (Community Mental Health Team)? Although a referral from a GP is usually needed, some areas do allow self-referrals, so might be worth checking. Just do an internet search to find out more about the service in your area.
If the Talking Therapies you refer to is part of the IAPT (Improving Access to Psychological Therapies) initiative, then they normally offer an initial assessment by telephone followed by up to six 1:1 sessions of therapy.
If you can get G accepted by the CMHT, their support is likely to be more comprehensive and longer term.
Not saying it is the answer or that the waiting list will be any shorter than the Talking Therapies one that G is already on, but may be worth a try…?
The trigger occurred after an appointment with Neurology. The Consultant was the best we have ever met - second only to a Urology Consultant as she sat and listened - I mean LISTENED to what Graham had to say. Subsequently, when I alerted her to the problem she called Graham/us back in urgently to check on his welfare (what??? that’s never happened before!) She also referred him to a Cognitive Specialist Nurse, whose background is in MH. SHE has referred to the local MH Team as even she admitted that the providers of the so-called Talking Therapy (ie a four part webcast - which was so generic it had nothing of relevance to Graham - talked AT HIM - about what to do in stressful situations at work, to someone who has been forced to stop work due to a stroke - GREAT!)
We’ve had rapid contact with the Team and he is due an Assessment phone call on 2nd Jan - lasting up to 90 minutes and we can both take part (so flasks of coffee on standby and I will have to be ready when he runs out of steam). The referring nurse knows the guy who is phoning and said he was one of her mentors when she started out so he has huge experience and is ‘one of the nicest people I know - and so easy to talk to…’ so it seems they will be much better.
As far as the company providing the ‘talking therapy’ they insist on the four week webinar - THEN you go on a waiting list for 1:1… The waiting list is at east 18 months long. I know several people who are in the process of compiling a group complaint to the Local Commissioners about them saying they are ‘not fit for purpose’ as all they do is make an assessment then say ‘if you need help ring the Samaritans’. BUT IT IS THEIR JOB TO PROVIDE HELP…
I/we are hoping the assessment on 2nd Jan will be of great benefit as we’ve been told that they will continue long-term support in a very personalised way, rather than a ‘one-size-fits-all’ solution.
Thanks again. Let’s hope things improve with the initial Assessment!
I’m sure G and Chris wish every day that they were still fit and well, running their business and taking an active role in society. How difficult can it be for officials to understand the effects of being disabled? Not just on the person concerned, but also their carer? Sleepless nights, no time off, caring night and day. 24/7, 52 weeks a year? Disability is NOT a “lifestyle choice” neither is being a carer for a disabled person. Isn’t persecuting disabled people classed as a “hate crime” already?
This is not an answer really.
I needed therapy once a week was not enough.
I waited years trying to find it for fair price or through nhs.
In the end I payed £70 a week for 5 years.
Extremely expensive but I was not able to relate calmly with out the help.
I know have a clear mind and identity.
Sorry not to have better idea but sometimes even though its v tough its best to pay for the best.
Probably not v helpful sorry
Ula
Thanks @bowlingbun Not a day goes by when I don’t wish to turn back the clock. Some ‘officials’ don’t understand and do not care. They get a nice hefty salary with paid holidays and sick pay - why should they bother about the rest of us?
I like the comment about Hate Crime - or even just falling foul of the DDA 2010 !!! But I suppose the argument would e that they don’t provide the care to a healthy person so not providing it for a disabled is not discrimination!!! Sounds like the sort of justification used on “Yes Minister”!!!
@ula That was what I feared - an open ended commitment to high fees when the Care provision should be down to NHS. It is called ‘preventative treatment’ isn’t it? Save many tens of thousands by spending a few thousand early - but wait the Bean Counters can’t quantify the saving so it does not exist… That from a life long ‘bean counter’…