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Thread: Help: Caring for my mother

  1. #1
    Grand Master markrlondon's Avatar
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    Help: Caring for my mother

    I am desperate and don't know where to turn for effective help. Any advice anyone can give would be gratefully received.

    Over time I have effectively become the full time carer for my mother. She has arthritis and increasingly frequent bouts of gout. She has been bedbound more than five years. She has a carer (whom she pays for) who comes twice a week to assist with washing and personal care.

    Until last week we were coping adequately on this basis. Despite being bedbound, my mother was able to sit up on he edge of the bed, lay down, move around the bed, etc. and deal with er... bodily functions herself.

    However, very suddenly around Wednesday last week she began to complain of severe back pain and was suddenly unable to cope with all of the things she had previously been doing. She is now unable to lay down, sit up, or move around on the bed on her own. She needs to be manhandled and can offer virtually no assistance. Her appetite has also gone.

    I believe that my mother needs both a medical assessment as well as an urgent assessment of care needs. I am no longer able to look after her alone as I just don't have the strength to be able to move her.

    My mother and I spoke to the GP on Friday but I don't think we communicated the seriousness of all this at the time. He did not want to come out to examine her. Since then it seems to have got worse still, with it taking me three hours to get my mother from laying on her side to sitting up on the edge of the bed.

    What do I do next? Whom do I contact?

    GP seems disinterested or I don't know the right words to use. Who else?

  2. #2
    Master Alansmithee's Avatar
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    Quote Originally Posted by markrlondon View Post

    GP seems disinterested or I don't know the right words to use. Who else?
    So here is the hard truth - because you are acting as a carer, very little will be done unless you actually create a crisis. if you really want to force the issue, you need to say (even if it's not true) that you cannot care for your mother anymore - you might need to contact social services and say it is an adult safe-guarding issue. They will then present to you as if you need to attend a lot of meetings, these are just to get you to agree to do stuff - don't go to any of them and stick to the line that you cannot care anymore - even tell them you plan to leave if you have to.

    This truthfully and honestly will get swifter action than anything else.

  3. #3
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Alansmithee View Post
    if you really want to force the issue, you need to say (even if it's not true) that you cannot care for your mother anymore
    This is true as things stand. It has reached the limits of my ability alone.

    I suspect I can still cope with, say, a hoist (which we had briefly before but did not need).

    ... more to follow... have to deal with visitor

  4. #4
    Grand Master Passenger's Avatar
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    Good luck mark, I hope you and your mother get the help needed. I believe AS has the right of it.

  5. #5
    I'm so very sorry for the situation you and your mother are in; please remember that you are not alone and there is help out there for you both.

    Carers UK give help, guidance and support to informal carers, such as you: https://www.carersuk.org/help-and-advice

  6. #6
    Grand Master jwg663's Avatar
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    The first thing to do is phone an ambulance. Now.
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  7. #7
    First off, phone your Mom's GP Surgery and insist on speaking to the Practice Manager (PM). You do not have to explain the whole thing to the Receptionist (Gatekeeper). Explain the issue and drop the term 'duty of care' into the conversation. Ask for advice and next steps. You are already in a crisis situation. Tell the PM this.

    If no joy, find your local NHS Trust website and find the PALS (Patient Advice and Liaison Service) contact number and ring them. Explain what you have done so far and ask for their help in proceeding. They helped me a lot with my aged Mom's care.

    Let us know if this produces any results.

  8. #8
    Master daveyw's Avatar
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    Have you tried ‘help the aged’? They’re a good start as well as ‘age concern’.
    Also, try the dr again or if your mum is in pain an ambulance. It may seem extreme but with you present as a care giver the ‘system’ will not honour of its way to accommodate. We have a slightly different history with my mum’s dementia but it wasn’t until my dad got mum into hospital with a UTI that he got any real help and involvement from social services.
    Good luck


    Good luck to you and your mum.

  9. #9
    Quote Originally Posted by markrlondon View Post
    I am desperate and don't know where to turn for effective help. Any advice anyone can give would be gratefully received.

    Over time I have effectively become the full time carer for my mother. She has arthritis and increasingly frequent bouts of gout. She has been bedbound more than five years. She has a carer (whom she pays for) who comes twice a week to assist with washing and personal care.

    Until last week we were coping adequately on this basis. Despite being bedbound, my mother was able to sit up on he edge of the bed, lay down, move around the bed, etc. and deal with er... bodily functions herself.

    However, very suddenly around Wednesday last week she began to complain of severe back pain and was suddenly unable to cope with all of the things she had previously been doing. She is now unable to lay down, sit up, or move around on the bed on her own. She needs to be manhandled and can offer virtually no assistance. Her appetite has also gone.

    I believe that my mother needs both a medical assessment as well as an urgent assessment of care needs. I am no longer able to look after her alone as I just don't have the strength to be able to move her.

    My mother and I spoke to the GP on Friday but I don't think we communicated the seriousness of all this at the time. He did not want to come out to examine her. Since then it seems to have got worse still, with it taking me three hours to get my mother from laying on her side to sitting up on the edge of the bed.

    What do I do next? Whom do I contact?

    GP seems disinterested or I don't know the right words to use. Who else?
    Can you ask to speak to a different GP?

  10. #10
    main info regarding speaking to the practice manager etc has already been given , theres some info on the age UK site.

    https://www.ageuk.org.uk/information...ranging-care/#

    *as another note , if you are going to complain about a health service in your area i'd forget PALS and go straight to the local CCG instead.
    PALS are a waste of time imo as the they work for the people you are complaining about ( its like someone writing to me to complain about something ive done )

  11. #11
    Grand Master markrlondon's Avatar
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    Thank you for your reply.

    Quote Originally Posted by markrlondon View Post
    This is true as things stand. It has reached the limits of my ability alone.

    I suspect I can still cope with, say, a hoist (which we had briefly before but did not need).

    ... more to follow... have to deal with visitor
    Ok, visitor has gone. The visitor was in fact my mother's paid for carer who washes and cleans her. She has now (quite suddenly) effectively moved from assisting my mum doing these things to largely having to do them for her. I really can't understate the rapidity of this change. It's something of a shock.

    I wrote above that this has reached the limits of my ability alone but in fact it has exceeded them.

    As I mentioned above, I think I could still cope if we had a hoist again and possibly someone in twice a day to help operate it. Specifically, getting the hoist strop on and off my mum might still be a two person job so that would be where I'd need the help.

    Either that or she will have to go into a nursing home. Which, quite frankly, terrifies me, as it means I'll be made homeless.

    I'll reply to all the other responses now.
    Last edited by markrlondon; 4th August 2020 at 12:52.

  12. #12
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    I had this with my mum at the start of covid she had stopped eating and had a couple of ipad facetimes with the gp who said she looked OK after another couple of days I insisted she was taken it to hospital she was in for 5 weeks and nearly died and would have done if she was left at home

  13. #13
    Grand Master markrlondon's Avatar
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    Thank you so much to everyone for your responses.

    Quote Originally Posted by Passenger View Post
    Good luck mark, I hope you and your mother get the help needed. I believe AS has the right of it.
    Quote Originally Posted by jwg663 View Post
    The first thing to do is phone an ambulance. Now.
    Quote Originally Posted by dougair View Post
    Can you ask to speak to a different GP?
    It has crossed my mind to call an ambulance but there is a very real risk that they'll refuse to take her anywhere as she is not actually ill, as such (despite being ill), if that makes sense. Also, I know that they won't be able to lift her. Would need specialist kit. And bariatric wheelchairs won't fit through the doors.

    Of course, I might well need the ambulance if I push my heart too far trying t move my mum. (As a recap: I had a heart attack in 2015, have diastolic heart dysfunction, high bp, diabetes, so not exactly fighting fit to be full time primary carer).

    As for speaking to a different GP, that's difficult to arrange. You call the surgery number and ask to speak to a GP and a GP (maybe, eventually) calls back. Thus it is impractical to ask for a specific GP.

    However, the practice manager approach seems more likely to produce a response.

  14. #14
    Grand Master Chris_in_the_UK's Avatar
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    Quote Originally Posted by jwg663 View Post
    The first thing to do is phone an ambulance. Now.
    I agree - radical as though it may seem, it will get her properly assessed and open the correct care pathways.
    When you look long into an abyss, the abyss looks long into you.........

  15. #15
    Citizens Advice have a phone line you can call. Sorry if you already tried that, i found the thread quite upsetting to read because my mother is currently losing mobility rapidly with back / nerves / sciatica

  16. #16
    Master RABbit's Avatar
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    Quote Originally Posted by markrlondon View Post
    It has crossed my mind to call an ambulance but there is a very real risk that they'll refuse to take her anywhere as she is not actually ill, as such
    Acute onset back pain and sudden change in her ability to do things is definitely a medical problem.
    She may well need proper investigation so it would be appropriate to get an ambulance.
    With an admission should also come proper discharge planning including OT assessment and social worker input to look at increasing her care package, physical aids like a hoist etc.
    Don’t prevaricate, or else a crisis may ensure and things get taken out of your hands. Good luck.

  17. #17
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by hughtrimble View Post
    I'm so very sorry for the situation you and your mother are in; please remember that you are not alone and there is help out there for you both.

    Carers UK give help, guidance and support to informal carers, such as you: https://www.carersuk.org/help-and-advice
    Thanks for the link. I'll look into it.

    Quote Originally Posted by Alpha4 View Post
    First off, phone your Mom's GP Surgery and insist on speaking to the Practice Manager (PM). You do not have to explain the whole thing to the Receptionist (Gatekeeper). Explain the issue and drop the term 'duty of care' into the conversation. Ask for advice and next steps. You are already in a crisis situation. Tell the PM this.

    If no joy, find your local NHS Trust website and find the PALS (Patient Advice and Liaison Service) contact number and ring them. Explain what you have done so far and ask for their help in proceeding. They helped me a lot with my aged Mom's care.

    Let us know if this produces any results.
    Thank you. I'll try calling the PM today by 13:45 if the GP has not called back by then. The key words there to my mind are "crisis situation". Yes, this is genuinely a crisis. I am extremely worried that if I let me mum lay down in bed tonight then I will not be able to get her up again tomorrow.

    Quote Originally Posted by daveyw View Post
    Have you tried ‘help the aged’? They’re a good start as well as ‘age concern’.
    Also, try the dr again or if your mum is in pain an ambulance. It may seem extreme but with you present as a care giver the ‘system’ will not honour of its way to accommodate. We have a slightly different history with my mum’s dementia but it wasn’t until my dad got mum into hospital with a UTI that he got any real help and involvement from social services.
    Good luck

    Good luck to you and your mum.
    Well, my mum is in near-permanent pain and has been for years due to the arthritis and increasingly common bouts of gout so pain on its own doesn't justify an ambulance. However, from previous experience with others I know, as you say, that sometimes the only way to get things moving is with an emergency hospital visit. If I can't get her up after laying down, I might have no choice but to call an ambulance.

    To complicate things, my mother's gout has been partly controlled via Colchicine. However, she will not now take this since it causes uncontrollable diarrhea. That said, the new, wholly debilitating pain that she is experiencing goes beyond what Colchicine, Co-codamol or Ibuprofen can touch.


    Quote Originally Posted by pugster View Post
    main info regarding speaking to the practice manager etc has already been given , theres some info on the age UK site.

    https://www.ageuk.org.uk/information...ranging-care/#

    *as another note , if you are going to complain about a health service in your area i'd forget PALS and go straight to the local CCG instead.
    PALS are a waste of time imo as the they work for the people you are complaining about ( its like someone writing to me to complain about something ive done )
    Many thanks.

  18. #18
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    Quote Originally Posted by Chris_in_the_UK View Post
    I agree - radical as though it may seem, it will get her properly assessed and open the correct care pathways.
    It's not radical. It's simply what is required, immediately, in the described circumstances. Everything else comes afterwards.
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  19. #19
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Chris_in_the_UK View Post
    I agree - radical as though it may seem, it will get her properly assessed and open the correct care pathways.
    Yes, I can see this and as I mentioned above I've seen in happen a couple of times with friends and relations. However, it's something of a nuclear option. It's a fallback for tomorrow morning if I can't get her up.

    Quote Originally Posted by xellos99 View Post
    Citizens Advice have a phone line you can call. Sorry if you already tried that, i found the thread quite upsetting to read because my mother is currently losing mobility rapidly with back / nerves / sciatica
    Thanks. I will speak to CAB if other approaches don't work.

    Sorry to hear about your mum. I've spoken to a few friends and it seems that everyone has something wrong with them.

    Quote Originally Posted by RABbit View Post
    Acute onset back pain and sudden change in her ability to do things is definitely a medical problem.
    She may well need proper investigation so it would be appropriate to get an ambulance.
    With an admission should also come proper discharge planning including OT assessment and social worker input to look at increasing her care package, physical aids like a hoist etc.
    Don’t prevaricate, or else a crisis may ensure and things get taken out of your hands. Good luck.
    Thanks. These are very good points. My view is certainly that this is a medical problem.

  20. #20
    Grand Master markrlondon's Avatar
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    An update:-

    On Friday, when we spoke to the GP, he ordered a blood test to be taken by district nurses. (As I say, my mother's mobility has worsened since then). This is to establish kidney function with a view to moving to different anti-gout medication. The district nurses just called to confirm an appointment and I was able to tell them the full situation.

    The district nurse says that her manager will call back or make an emergency referral to social services.

    So, progress of sorts.

    ( As an aside, we live on the border of Camden and Brent. We are in Camden; our GP is in Brent. When the GP wants blood tests, they call Brent district nurses and it was Brent who called above. However, normally, my mother receives services from Camden district nurses (urinary catheter changes). It gets confusing. )

  21. #21
    Grand Master Neil.C's Avatar
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    Mark, please get in touch with social services at the local council.

    My Mum went from being fairly able to bed bound and she had carers coming in three times a day to do the necessary and cook her meals.

    After her last spell in hospital she was recommended full time care in a nursing home which cost us £1100 a week but so worth it as her care was marvellous even though she died last week at the age of 90.

    I reiterate, get in touch with social services. They will send somebody round to assess your Mum.
    Cheers,
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  22. #22
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Neil.C View Post
    Mark, please get in touch with social services at the local council.

    My Mum went from being fairly able to bed bound and she had carers coming in three times a day to do the necessary and cook her meals.

    After her last spell in hospital she was recommended full time care in a nursing home which cost us £1100 a week but so worth it as her care was marvellous even though she died last week at the age of 90.

    I reiterate, get in touch with social services. They will send somebody round to assess your Mum.
    See message #20 above. It looks like an urgent referral to social services (albeit the wrong borough!) might be in progress now.

    I am contemplating making my own call to Camden social services.

    So sorry about your mum dying last week.


    It strikes me that my mother is right on the edge of what I could cope with with the proper equipment (e.g. hoist). If she has to go into a nursing home then this will be even more damaging to me personally. As I have cared for my mother more and more, my income has dropped to nothing and all my savings are gone. If my mother was forced to sell her home to pay for a nursing home, I would be made homeless with no job, no income, no savings, no way to store my personal belongings, and no way to look after my cats. £1100 pw or anything like it is unaffordable for me or my mother.

    For the avoidance of doubt: I am living in my lifelong family home which is 100% owned by my mum. She often says "this is your house too you know" but has never made any effort to make that true. She has left the house to me in her will but I have no legal claim on it while she is alive.

    As you can tell, I'd like to avoid a nursing home. It would destroy my own life and leave me in a position where I have few assets with which to recover.

  23. #23
    Grand Master Neil.C's Avatar
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    Quote Originally Posted by markrlondon View Post
    See message #20 above. It looks like an urgent referral to social services (albeit the wrong borough!) might be in progress now.

    I am contemplating making my own call to Camden social services.

    So sorry about your mum dying last week.


    It strikes me that my mother is right on the edge of what I could cope with with the proper equipment (e.g. hoist). If she has to go into a nursing home then this will be even more damaging to me personally. As I have cared for my mother more and more, my income has dropped to nothing and all my savings are gone. If my mother was forced to sell her home to pay for a nursing home, I would be made homeless with no job, no income, no savings, no way to store my personal belongings, and no way to look after my cats. £1100 pw or anything like it is unaffordable for me or my mother.

    For the avoidance of doubt: I am living in my lifelong family home which is 100% owned by my mum. She often says "this is your house too you know" but has never made any effort to make that true. She has left the house to me in her will but I have no legal claim on it while she is alive.

    As you can tell, I'd like to avoid a nursing home. It would destroy my own life and leave me in a position where I have few assets with which to recover.
    Good, you have the wheels in motion.

    I'm sure care homes are means tested so you may not have to pay for your Mum's care at all.

    You could still live in the house as you would be homeless otherwise.

    I'm sure social services will outline the options, they are usually very good.

    BTW thanks for the condolences mate.

    All the best.
    Neil.
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  24. #24
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    Quote Originally Posted by Neil.C View Post
    Good, you have the wheels in motion.

    I'm sure care homes are means tested so you may not have to pay for your Mum's care at all.

    You could still live in the house as you would be homeless otherwise.

    I'm sure social services will outline the options, they are usually very good.

    BTW thanks for the condolences mate.

    All the best.
    Neil.
    What Neil said. Social Services were excellent for both my Mum and my Dad who were in their 90's and still living in their own home.
    Best Regards - Peter

    I'd hate to be with you when you're on your own.

  25. #25
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by Neil.C View Post
    Good, you have the wheels in motion.
    I think so although (unsurprisingly) I've not heard back from them yet. Following this message I will either call the GP practice manager or Camden social services (the correct borough).

    Quote Originally Posted by Neil.C View Post
    I'm sure care homes are means tested so you may not have to pay for your Mum's care at all.

    You could still live in the house as you would be homeless otherwise.

    I'm sure social services will outline the options, they are usually very good.
    I've done some research about this. Yes, paying for residential care home is means tested but this normally includes the market value of one's main residence/home. This means that almost everyone who owns their own home is normally required to pay full rate for their residential care! So much for buying one's own home (compared to renting or relying on the state to provide). The usual way of doing this is to sell the property.

    There are exceptions that allow one's home to be excluded from the means testing but none of these exception apply to my mum's or my situation at present.

    Yes, I'd be homeless otherwise but, as far as I am able to establish, a council has no obligation to leave a person (who is not subject to one of the statutory exceptions I mention above) in their relative's property. Yes, a council has an obligation to house someone who is homeless but it does not follow that the council has any obligation to do so in the person's current home. Indeed, I would not be eligible for council accommodation until I had actually been evicted and made homeless (by the council)!

    There are possibilities for deferred payments (the council takes a charge on the property to be repaid on the owner's death) and that is perhaps the best I can hope for. It would still mean liquidating the property when my mum dies but I wouldn't be made homeless so quickly and I'd have the cash. Still be losing my lifelong, multi-generational family home though.

    Nevertheless, all this is jumping the gun. Mum is still sitting here on the edge of her bed drifting off to sleep.

  26. #26
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    Sorry you're going through this.

    If you can, split the problems from one another. Sounds like you have had good advice re: moving swiftly in regard to medical assessments.

    It may also be worth speaking with someone about the legal aspects of the property and your position in it. I know there is a cost to this but it could be valuable advice.

  27. #27
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    Really sorry to hear this Mark - I fundamentally disagree with people having to sell their homes. However, in addition to what has been posted, I assume you are under 60, but you may very well qualify as being disabled yourself, which would place you in to a protected category? Happy to chat in private if you prefer.

  28. #28
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    Very sorry to hear this, and not got a lot to add to the good advice above.

    I'm surprised to hear that your mother's gout is being treated with Colchicine long term. My understanding (as a gout sufferer) is that Colchicine is normally only used short term to deal with acute attacks, but that long term treatment is with Allopurinol or similar. Might be worth clarifying this with the doctor? Also, is there a hospital consultant involved in your mother's treatment for any of her ailments? If so, it might be worthwhile contacting them, or their associated clinical nurse specialists, for a review.

    Hope that things work out, both for your mother and for you.

  29. #29
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    Quote Originally Posted by PhilipK View Post
    I'm surprised to hear that your mother's gout is being treated with Colchicine long term. My understanding (as a gout sufferer) is that Colchicine is normally only used short term to deal with acute attacks, but that long term treatment is with Allopurinol or similar.
    Yes, the Colchicine is intended to be used on an as-needed basis for gout attacks. The advice from the GP who prescribed it a couple of years ago was to begin taking it the moment that the gout started. However, this has over time got to the stage that the gout occurs almost all the time. There seems to be less and less time between gout attacks.

    And it turns out that (in my mum's case at least) continued use of Colchicine results in uncontrollable diarrhoea. Loperamide (Immodium) was not full effective in controlling the diarrhoea.

    Despite diarrhoea, my mum was able to cope with keeping clean while she still had 'normal' (for her) mobility but, as of last Tuesday/Wednesday or so (worsening again on Friday/Saturday), her mobility has disappeared entirely. Understandably she no longer wishes to take Colchicine.

    When we spoke to the GP on Friday, he arranged blood tests. (We failed however to describe the full seriousness of mum's new symptoms of suddenly reduced mobility). The point of the tests was to establish kidney function baseline with a view to prescribing Allopurinol. My mum's previous GP (same practice, pre-merger) has been against prescribing Allopurinol due to possible strain on kidneys.


    In addition to the additional pain and exceptionally sudden new worsening of her mobility, mum also has a dry throat (new) and raspy voice (new), loss of appetite (new), and reddening of lower leg/ankle lymphoedema. She has had lower leg/ankle lymphoedema for some time which has also had a red tinge on the front of the shins for some time (since before xmas). However, I have noticed that in the last few days the redness may have spread -- difficult to tell. The GP looked at the redness on Friday in some pics I sent him and diagnosed dermatitis. However, it looks more like some kind of cellulitis to me.

    I have some experience of cellulitis in lower leg lymphoedema (on me!) and it would, in part, explain some of mum's other symptoms, including the sudden increase in overall pain level and loss of mobility. However, I understand that cellulitis commonly has a temperature differential between red and surrounding areas and I could not detect it on my mum.
    Last edited by markrlondon; 7th August 2020 at 14:57.

  30. #30
    Grand Master markrlondon's Avatar
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    Some further progress:-

    We did not receive a call back from GP, Brent district nurse, or Brent social services. So I decided to call Camden social services (who are, afterall, our correct local social services).

    They were very helpful. I was able to explain the full situation and things seem to be moving, although you can hear the wheels squeaking. They spoke to the GP who told them to tell me to call at 8am tomorrow to arrange a GP visit. An actual, in person, GP visit. Having done that, we should call back the Camden SS to tell them that the GP has been.

    Following that the plan is for the case to be allocated to an area manager with occupational therapy and/or social worker involvement as needed.

    So things are moving. What a relief.

    Tonight I shall still have to manhandle my mum from her current sitting position on the edge of the bed to a lying position. And tomorrow morning I shall still have to go through the agony of getting my mum up from the lying position to a sitting position. But there is light at the end of the tunnel.

    I am still coming to terms with the incredibly rapidity with which mum's mobility has decreased. It's really shocking.


    Thank you so much to everyone. I wouldn't have been able to make progress today without your help.

  31. #31
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    I would'nt take any risks. Dial 999 and if it turns out to be curable/ manageable then great. You can then have the conversation about her long term care. I really would not delay. Good luck.

  32. #32
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    Watch your back, Mark. Lifting in an awkward position could place a lot of pressure on you as well.

  33. #33
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    I hope you manage to get things sorted for both your sakes but I would echo the suggestions already made to call an ambulance on the grounds already stated. Your mother (and you) will,I think,be better of in a hospital at the moment and if she is admitted then she will get the medical attention & help she needs sooner rather than later.

  34. #34
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by bobc View Post
    I would'nt take any risks. Dial 999 and if it turns out to be curable/ manageable then great. You can then have the conversation about her long term care. I really would not delay. Good luck.
    Despite the long list of symptoms above my mum just isn't ill enough to justify 999. Really, it wouldn't make sense as things stand. Of course, if progress stalls and I can no longer get her into a sitting position then that will change but, for now, we're making slow progress.

    Quote Originally Posted by AlphaOmega View Post
    Watch your back, Mark. Lifting in an awkward position could place a lot of pressure on you as well.
    Yes, my less-than-healthy heart was noticeably strained when manhandling her into a sitting position this morning. I very much hope that that isn't going to continue for much longer. We'll see how the progress develops.

  35. #35
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    Quote Originally Posted by markrlondon View Post
    Some further progress:-

    We did not receive a call back from GP, Brent district nurse, or Brent social services. So I decided to call Camden social services (who are, afterall, our correct local social services).

    They were very helpful. I was able to explain the full situation and things seem to be moving, although you can hear the wheels squeaking. They spoke to the GP who told them to tell me to call at 8am tomorrow to arrange a GP visit. An actual, in person, GP visit. Having done that, we should call back the Camden SS to tell them that the GP has been.

    Following that the plan is for the case to be allocated to an area manager with occupational therapy and/or social worker involvement as needed.

    So things are moving. What a relief.

    Tonight I shall still have to manhandle my mum from her current sitting position on the edge of the bed to a lying position. And tomorrow morning I shall still have to go through the agony of getting my mum up from the lying position to a sitting position. But there is light at the end of the tunnel.

    I am still coming to terms with the incredibly rapidity with which mum's mobility has decreased. It's really shocking.


    Thank you so much to everyone. I wouldn't have been able to make progress today without your help.
    After my mum came out of hospital after nearly dying she was making good progress for an 83 year old she could walk into the kitchen to make food she had to go back in to hospital to have a leg angioplasty came out about 3 weeks ago and can only just walk across the lounge now Old people can go downhill very quickly I would ignore the gp and get your mum into hospital as has already been said she will have a proper check to see what’s wrong instead of you and your gps guessing

  36. #36
    Grand Master learningtofly's Avatar
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    Quote Originally Posted by markrlondon View Post
    I think so although (unsurprisingly) I've not heard back from them yet. Following this message I will either call the GP practice manager or Camden social services (the correct borough).



    I've done some research about this. Yes, paying for residential care home is means tested but this normally includes the market value of one's main residence/home. This means that almost everyone who owns their own home is normally required to pay full rate for their residential care! So much for buying one's own home (compared to renting or relying on the state to provide). The usual way of doing this is to sell the property.

    There are exceptions that allow one's home to be excluded from the means testing but none of these exception apply to my mum's or my situation at present.

    Yes, I'd be homeless otherwise but, as far as I am able to establish, a council has no obligation to leave a person (who is not subject to one of the statutory exceptions I mention above) in their relative's property. Yes, a council has an obligation to house someone who is homeless but it does not follow that the council has any obligation to do so in the person's current home. Indeed, I would not be eligible for council accommodation until I had actually been evicted and made homeless (by the council)!

    There are possibilities for deferred payments (the council takes a charge on the property to be repaid on the owner's death) and that is perhaps the best I can hope for. It would still mean liquidating the property when my mum dies but I wouldn't be made homeless so quickly and I'd have the cash. Still be losing my lifelong, multi-generational family home though.

    Nevertheless, all this is jumping the gun. Mum is still sitting here on the edge of her bed drifting off to sleep.
    What about an equity release mortgage, Mark, should it come to that? You can normally release over 30% of the value of the home that way, without any requirement to make repayments until the house is eventually sold.
    Last edited by learningtofly; 4th August 2020 at 19:07.

  37. #37
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    What would happen if your mum went into hospital and upon release you effectively refuse to care for her, citing anything that would concern the hospital.

    Would social services have to step up by default at the insistence of the hospital?

    Obviously very emotionally tough thing to do but if it got the best result for your mum it would be a result.


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  38. #38
    Grand Master AlphaOmega's Avatar
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    Quote Originally Posted by markrlondon View Post
    Yes, my less-than-healthy heart was noticeably strained when manhandling her into a sitting position this morning. I very much hope that that isn't going to continue for much longer. We'll see how the progress develops.
    Will PM you instead.
    Last edited by AlphaOmega; 4th August 2020 at 19:36.

  39. #39
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    I had a similar situation with my mother who past away March last year.

    For help with your mother’s general condition the key people are: social services, occupational therapist and care manager. For medical needs: ambulance and doctor.

    Is your mother taking pain killers for the arthritis? My mother had a transdermal patch giving a slow release of morphine over 3-4 data. One of the side affects is odemia and with the lack of movement the lymph nodes are not draining waste fluids from the legs in particular. This can be managed to an extents with gentle lymphatic massage of the legs and/or wearing compression tights prescribed and custom made by NHS.

    With odemia and diabetes your mother is susceptible to cellulitis, the red patch of skin which will be W warmer than normal skin. It needs to be treated with a 7-14 day course of oral antibiotics which take 3-4 days to start having an affect.

    If not treated in time it can lead to sepsis, this will show as general high temperature, confused mind, shaking, etc. Google the symptoms. If you have any inclination this is the case call an ambulance immediately as it’s very serious. Sepsis can occur all of a sudden when infections get out of hand. Strong intravenous antibiotics are needed in hospital.

    Do you have an ear thermometer to check mums temperature? These are the only accurate thermometers?

    Does your mother have a air mattress, essential if bed bound to help prevent pressure sores. Regular changing of position is essential also.

    Keep pestering the people mentioned above to get help.

    P.S. I’m not medically trained this is just what I have picked through experience with my own mother.


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  40. #40
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    Hi Mark

    In the longer term, your mum needs a care package. My mum is 86 and frail, and her package has increased from once a day to 2 carers 4 x a day, and this keeps things level. If that fails to meet her needs then it would move to residential care

    Supporting parents is one thing, but you can’t be a full time carer. I know these things happen by degree, but your mum being supported with sufficient care at home is the right approach

    How to get this support:

    1) A referral to social services. It looks like you have started this

    2) Should she be in hospital they would sort a package of care before discharge. Considering how dependent your mum is I’m sure that would discharge when to respite care when medically fit, before discharged home with a package of care, assuming she could manage at home.

    What is the medical role?

    I understand reticence about calling 999, but it is hard for us to have perspective, I’m a doctor and with my mum, my perspective was shot.

    I would strongly suggest a GP visit, the reason being is that she is off her baseline, and that needs a medical assessment.

    This is my recent experience with my mum for info
    Suddenly getting 3-4 fall alarms per day
    Mum lethargic and bed bound
    GP came, though her BP was low and a bit dehydrated
    Sent to hospital
    Stage 3 Acute Kidney Injury, a nasty mix of her diabetes, dehydration and one of her medicines
    10 days in hospital
    Mum much better
    Package of care increased from 1 carer at 8am, 5pm to 3 day calls plus a bed call, all 2 carers
    The increased care is being paid my the NHS until the Coronavirus crisis is over when it will be reassessed
    When reassessed, the max care bill will be £182.50 a week, which is manageable

    I see my mum during the week, but it’s nice, and I’m not fighting a crisis

    To summarise
    It is your job to be be supportive, but not be be a full time carer

    Social services will put in a care package to meet her needs. That may include respite to give you a break

    There HAS to be a medical assessment if mum is off her baseline to exclude sepsis, dehydration etc. That should be a GP visit, but if confused, abnormally drowsy or feverish I would call an ambulance

    This comes to all of us when our parents she, and it is manageable if help is sought

    Good luck and all the very best

    Dave





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  41. #41
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    Hi OP. I’m an Advanced Clinical Practitioner working in community services.

    Firstly you need to iterate to your GP that your mother is needing care in bed. This creates all manner of risk from pressure and moisture damage to moving and handling issues for you and other carers. More so, a sudden and acute
    bout of back pain needs reviewing it could be an exacerbation of her arthritis in which case her pain meds will need revising, or it could be an acute infection such as a UTI that’s impacts the kidneys.

    In your community there will be community nursing services that have links to physio and occupational therapy. The GP should be able to refer up to them for a home assessment of her mobility and activities of daily living needs. It varies from area to area, but generally speaking NHS services can provide home support and rehab (with equipment) temporarily to get a person back to baseline, usually over a period of 6 weeks; if full rehab can’t be achieved they will allocate a social worker who can review for a long term package of care via social services. These are financially assessed.

    So in summary

    1. Speak to your GP to stress how unwell you believe your mother to be.

    2. Via your GP, request a home assessment by the district nursing service. Enquire with them about home physio and occupational therapy.

    3. If you GP won’t refer, find out how to self refer.

    4. If you have no success down the health route, you can make a self referral to adult social care in your area - just google it and there will be a self referral number online.

    Unfortunately due to the Covid19 situation the response time of GPs and social services in particular isn’t great, which is why I would direct you to community nursing and therapy services.

  42. #42
    Grand Master markrlondon's Avatar
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    Three especially useful messages from CatalystGuy, helidoc and davidj54 above. I'll reply in more detail to them later today. Right now I've got to get some sleep.

    As things stand right now, the GP should be visiting at some point today. Hopefully he will be able to make a sensible diagnosis, including calling 999 if needed.

    I am in fact now concerned that my mum has an infection: The sudden increased back pain, seemingly increased overall pain, and (possibly increased) redness on her lymphoedema areas are suggestive of this. Although she is completely lucid (so far), I also know that she is very, very dehydrated. Getting her to drink is a challenge, and always has been. Kidney function is now beginning to worry me, quite apart from anything else I have previously mentioned.

    Mum has already experienced sepsis in the past: The current 'normal' situation (prior to her recent sudden worsening) came into effect after she developed a very serious bed sore in 2017 due to her old mattress having a protruding bed spring. She didn't tell me about it and I couldn't see it. :-( On that occasion I could see she was becoming ill and yet she fought and fought to have no medical involvement and it was only when I realised she had become delusional and was approaching semi-consciousness that I finally realised I had to call 999. One symptom on that occasion was severe overall body pain -- it hurt her no matter where she was touched on her body.

    It sounds hard to believe but it can be genuinely difficult to recognise that a person is fading in such a way, especially when they quite persuasively claim that all is well, even when it's not. You can't believe what they say: You have to go on your own assessment, but this is difficult if part of that assessment has to be based upon what a person says.

    In hospital, she was treated with antibiotics and closely avoided needing reconstructive surgery on the large hole in her leg and was eventually sent home. This resulted in the current overall care arrangement (which, as I've said, has been tolerable, liveable and relatively stable since 2017, albeit with (until last week's sudden change) gradual slow deterioration in mobility due to more and more frequent gout episodes).

    You live and learn.

    Have I made the same mistake again? I was pretty sure that there is no bed sore this time but in retrospect it's virtually impossible to see everywhere that there might be a bed sore. The clean/wash carer who comes in is incapable of turning my mum enough now to see if there is one. Nor can I now turn her enough on my own to check. I now realise that it needs one or two people with manual handling skills to check for certain with my mum's new lack of mobility.

    Since my mum was able to move around on the bed quite well under her own steam until recently, a bed sore seems less likely. (She has had a medical mattress on a social services-supplied hospital bed since coming out of hospital in 2017).

    However, I just don't know now. She could well have an infection from other sources, not least a UTI. (She has a urinary catheter).

    Well, I do know that calling 999 at 02:30am is a bad idea, and the GP is (should be) visiting at some point today. We will see what happens.

    I will reply more fully later.



    (Ear thermometer ordered for delivery today. Thank you Amazon).
    Last edited by markrlondon; 5th August 2020 at 03:13.

  43. #43
    Grand Master markrlondon's Avatar
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    Progress update:-

    I called the GP surgery at 08:00, as agreed with Camden social services, in order to arrange for an urgent visit from a doctor. And the surgery knew nothing of a call from social services. They booked a call back from the doctor at or after 10:00. We'll see how that goes.

    I do not want another day to slip past.

    last night I was able to successfully move my mum from sitting up on the edge of the bed to lying down and she seemed comfortable. I am still dreading getting her up. Although the wash/clean carer came on Tuesday, it was impossible for her to properly clean my mum and I am still very worried about bodily functions. There is now no way my mum can deal with these herself (she could until last week) and I can't either.

    If the GP isn't going to take action then I'll speak to Camden social services again and dial 999.

  44. #44
    Master PhilipK's Avatar
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    Quote Originally Posted by markrlondon View Post
    I am in fact now concerned that my mum has an infection: The sudden increased back pain, seemingly increased overall pain, and (possibly increased) redness on her lymphoedema areas are suggestive of this. Although she is completely lucid (so far), I also know that she is very, very dehydrated. Getting her to drink is a challenge, and always has been. Kidney function is now beginning to worry me, quite apart from anything else I have previously mentioned.
    If the doctor doesn't turn up shortly, then you really do need to call 999. Your mother requires urgent qualified medical attention.

  45. #45
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by CatalystGuy View Post
    I had a similar situation with my mother who past away March last year.

    For help with your mother’s general condition the key people are: social services, occupational therapist and care manager. For medical needs: ambulance and doctor.

    Is your mother taking pain killers for the arthritis? My mother had a transdermal patch giving a slow release of morphine over 3-4 data. One of the side affects is odemia and with the lack of movement the lymph nodes are not draining waste fluids from the legs in particular. This can be managed to an extents with gentle lymphatic massage of the legs and/or wearing compression tights prescribed and custom made by NHS.

    With odemia and diabetes your mother is susceptible to cellulitis, the red patch of skin which will be W warmer than normal skin. It needs to be treated with a 7-14 day course of oral antibiotics which take 3-4 days to start having an affect.

    If not treated in time it can lead to sepsis, this will show as general high temperature, confused mind, shaking, etc. Google the symptoms. If you have any inclination this is the case call an ambulance immediately as it’s very serious. Sepsis can occur all of a sudden when infections get out of hand. Strong intravenous antibiotics are needed in hospital.

    Do you have an ear thermometer to check mums temperature? These are the only accurate thermometers?

    Does your mother have a air mattress, essential if bed bound to help prevent pressure sores. Regular changing of position is essential also.

    Keep pestering the people mentioned above to get help.

    P.S. I’m not medically trained this is just what I have picked through experience with my own mother.
    Thanks for your comments.

    Yup, she's taking Co-codamol 500/30. This is briefly effective against the pain from gout but is better than nothing. She has lower leg/ankle/foot lymphoedema which I imagine is due primarily to just sitting day after day.

    Unfortunately compression tights would be impossible to get on or off her: Just too much pain from the gout and the current swelling would need to be reduced first.

    I am familiar with compression tights since, rather embarrassingly, I wear them too. I have lower leg lymphoedema which was initially contracted by (I think) an insect bite. Latterly my diabetes has exacerbated the lymphoedema. And so I wear custom made compression tights. Before my lymphoedema was properly treated, I suffered from a bout of cellulitis (which was dealt with by a specialist lymphoedema clinic at a nearby hospice) which is what caused/causes me to think that my mum my have cellulitis.

    As for the redness on my mum's lymphoedema, I can't detect a temperature difference (mentioned above) but I am still concerned.

    As in my message above, my mum has experienced sepsis and do NOT want to go down that route again. I don't think we're there yet but, ultimately, because she can no longer be kept in a hygienic condition then infections are going to creep in.

    Quote Originally Posted by CatalystGuy View Post
    Do you have an ear thermometer to check mums temperature?
    Now ordered.

    Quote Originally Posted by CatalystGuy View Post
    Does your mother have a air mattress, essential if bed bound to help prevent pressure sores. Regular changing of position is essential also.
    No, she has a hospital mattress on a hospital bed which was supplied following her 2017 hospital discharge. See message above. Until last week the hospital mattress was entirely adequate: She could move herself around on the bed, she had some bedbound mobility, meaning she wasn't putting pressure one just one spot forever. However, things have now changed. She needs people (well, me so far) to move her and she can offer very little assistance. In particular, she can do nothing to het her bottom off the bed and she is too heavy to life up without an electric hoist.

  46. #46
    Grand Master Chris_in_the_UK's Avatar
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    Quote Originally Posted by markrlondon View Post
    If the GP isn't going to take action then I'll speak to Camden social services again and dial 999.
    Mark, my heart goes out to you.

    This could (potentially) be a serious infection/sepsis and this needs urgently assessing.

    Dial 999 mate - explain the issue and the sudden deterioration, the Paramedics will assess etc. and you will get the correct stuff in place for your mum.
    When you look long into an abyss, the abyss looks long into you.........

  47. #47
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by helidoc View Post
    In the longer term, your mum needs a care package. My mum is 86 and frail, and her package has increased from once a day to 2 carers 4 x a day, and this keeps things level. If that fails to meet her needs then it would move to residential care

    Supporting parents is one thing, but you can’t be a full time carer. I know these things happen by degree, but your mum being supported with sufficient care at home is the right approach

    How to get this support:

    1) A referral to social services. It looks like you have started this

    2) Should she be in hospital they would sort a package of care before discharge. Considering how dependent your mum is I’m sure that would discharge when to respite care when medically fit, before discharged home with a package of care, assuming she could manage at home.

    What is the medical role?

    I understand reticence about calling 999, but it is hard for us to have perspective, I’m a doctor and with my mum, my perspective was shot.

    I would strongly suggest a GP visit, the reason being is that she is off her baseline, and that needs a medical assessment.

    This is my recent experience with my mum for info
    Suddenly getting 3-4 fall alarms per day
    Mum lethargic and bed bound
    GP came, though her BP was low and a bit dehydrated
    Sent to hospital
    Stage 3 Acute Kidney Injury, a nasty mix of her diabetes, dehydration and one of her medicines
    10 days in hospital
    Mum much better
    Package of care increased from 1 carer at 8am, 5pm to 3 day calls plus a bed call, all 2 carers
    The increased care is being paid my the NHS until the Coronavirus crisis is over when it will be reassessed
    When reassessed, the max care bill will be £182.50 a week, which is manageable

    I see my mum during the week, but it’s nice, and I’m not fighting a crisis
    That's very informative, thanks.


    Quote Originally Posted by helidoc View Post
    To summarise
    It is your job to be be supportive, but not be be a full time carer

    Social services will put in a care package to meet her needs. That may include respite to give you a break

    There HAS to be a medical assessment if mum is off her baseline to exclude sepsis, dehydration etc. That should be a GP visit, but if confused, abnormally drowsy or feverish I would call an ambulance
    (Bold added by me)

    This is it. My mum is now off her accustomed baseline and there does need to be some kind of medical assessment. She is not yet confused and she is not feverish (as far as I can tell). She is drowsy but has been taking 500/30 co-codamol (more than she normally prefers to take) which makes her drowsy. Overall, though, I know she is dehydrated. She has a urinary catheter which means I can see urine volume and colour: She is producing urine but not the usual amount and it is very concentrated. Also, because I am the person who brings her all food and drink, I know that she has been eating virtually nothing and drinking less than she should. So she is dehydrated.

    For the avoidance of doubt, a care package was set up following her 2017 hospital discharge. Initially this was two carers, twice a day, in addition to me being there most of the time providing food, drink, and general support. We cut down the carers to one person twice a week providing washing/cleaning services/assistance because my mother recovered and improved was able to cope (with me being there) with that level of carer support. However, the rapid loss of mobility she has now experienced means that things need to be completely reset.

    It's interesting you say that "you can’t be a full time carer". That is exactly what I have become. Not just since her 2017 hospital discharge but before that. Since about 2001 in fact when her arthritis first began to become so severe that she could not have continued to live alone.

  48. #48
    Grand Master markrlondon's Avatar
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    Quote Originally Posted by PhilipK View Post
    If the doctor doesn't turn up shortly, then you really do need to call 999. Your mother requires urgent qualified medical attention.
    Quote Originally Posted by Chris_in_the_UK View Post
    Mark, my heart goes out to you.

    This could (potentially) be a serious infection/sepsis and this needs urgently assessing.

    Dial 999 mate - explain the issue and the sudden deterioration, the Paramedics will assess etc. and you will get the correct stuff in place for your mum.
    Well, the GP is due to call at or after 10:00. I am not presently optimistic that the conversation will result in an actual physical visit, but we'll see.

    Beyond that, I will speak to Camden social services again and possibly then call 999.

  49. #49
    Grand Master markrlondon's Avatar
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    Progress update:-

    I have just this second received a text message from the GP surgery saying: "You have been booked with the GP for a TELEPHONE CONSULTATION. Please wait for the doctor to telephone you. This will be within the 4 hours. Video consultation facility is available if needed".

  50. #50
    Grand Master Chris_in_the_UK's Avatar
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    Quote Originally Posted by markrlondon View Post
    Progress update:-

    I have just this second received a text message from the GP surgery saying: "You have been booked with the GP for a TELEPHONE CONSULTATION. Please wait for the doctor to telephone you. This will be within the 4 hours. Video consultation facility is available if needed".
    I suspect this is not going to get stuff sorted properly - good luck.
    When you look long into an abyss, the abyss looks long into you.........

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