Radio 4 - Today Programme (a chance to submit your comments / experiences)

Discussion in 'ARCHIVE FORUM: Support discussions' started by CraigC, Oct 18, 2007.

  1. CraigC

    CraigC Registered User

    Mar 21, 2003

    Radio 4 - Today Programme Special Report - they are gathering information at this stage.

    A chance to email your views, comments and experiences.
    I'll be letting them know what we've been going through, that's for sure.

    Kind Regards
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    I have sent a long e mail to them. I do hope that they read it and can find some points which are common to all of us. xxTinaT
  3. cat lover

    cat lover Registered User

    Oct 24, 2007
    #3 cat lover, Oct 24, 2007
    Last edited: Oct 24, 2007
    Radio 4 research

    Hi, I,m new to this forum and new to the 'Alzheimers Carer' role but already I have had some traumatic experiences, especially with the Health 'system'.

    My father was a professional footballer, he's always led an active life. Since he retired early to care for my Mum who has Diabetes complications, he has walked everyday, he loves being outdoors.

    Mum started to notice unusual behaviour and tried very hard for two years to get the doctor to take notice. She researched the symptoms herself and eventually insisted on a Memory Assessment by the Elderly Mental Health Team. She got the diagnosis she was expecting and luckily he was prescribed the latest medication. (I know it depends on local authority funding- post code lottery).
    Because of her ill health she found it difficult to cope with him and she felt afraid for herself because she had lost her Carer.

    I helped them sell their Mobile Home and move into the local Housing Association Sheltered Housing where they had daily help, meals cooked and an 'emergency' chord. I thought that things would settle for a few years but within less than a year, bearing in mind the emotional strain and adjustments experienced in moving at their time of life (mid 70's), Mums physical & mental health deteriorated.

    Unfortunately she doesn't understand Alzheimers and is very confrontational with him. This led to the Social Services seperating them for his safety, they put him into a Mental Hospital because there was nowhere else for him to live at short notice. It was a living Hell. The place was clean, staff were good, meals o.k but being locked up with 20 other patients who were completely 'gone' was frightening. Not only were they unpredictable and noisy but he saw what he could end up like which was terrifying!

    He had to spend 6 weeks in there before I could get him out. The consultant advised that he go into a Residential Home because he was at risk from Mum and also he couldn't go out alone any more because he had lost his road sense and spacial awareness. There was so much 'red tape' to get past. Assessments, meetings, tests by different people, for 1 week the ward was closed due to infection - we couldn't visit, he couldn't come out, it was aweful and his Alzheimers got worse by the day. I was grieving that it had come to this. We knew he would end up in a home but I really hoped he wouldn't know anything about it by that time. He seemed too young, too spritely, too active.

    Anyway, I followed the advice from the Authorities which was supposed to make the situation better for all of us, at the time we felt relief at getting some support and were hopeful that life would settle down.

    Mum & I visited 3 Care Homes and chose the one that promoted Alzheimers stimulation and activities which would give him a better quality of life and take the pressure off of me, I take him out walking every afternoon because if I don't he becomes withdrawn and I feel so sad.

    Within the first week we found out that the newly trained Manageress had quit. The old Manageress was 'acting' part time, morale was low, they are short staffed and underfunded ... the old old story of our Health Care system.

    Consequently they haven't been caring for him even to the Minimum National Standard, which I am now putting more time & effort into investigating in order to meet with them and ask for an action plan. I have enroled the help of a privately paid Carer to help with them both because my health is suffering, but that has financial implications.

    I have registered Power of Attorney to manage his finances and I'm in the process of applying for Social Services funding. We don't know, as yet, how much they will contribute but we are paying £100 per week of the £500 per week fee. They have said his Attendance Allowance has stopped which leaves Mum with just his pension to pay for it. So, on top of everything else we have money worries.

    Mum has just come out of hospital with a suspected Heart Attack. She suffers with Angina due to her Diabetes. They are both being treated for Urinary Tract Infections which make them even more confused and unable to cope.

    I could write a book, sorry!

    My experience so far is that you have to fight to get help, they promise you the Moon but in reality it's not there. It feels like we are in the shadow of an Eclipse. Let's hope he's still with us, to enjoy the sunshine when we come out the other side.
  4. okmurrays

    okmurrays Registered User

    Oct 17, 2007
    kelowna, bc, canada
    Thanks, I'll get my email in now.
  5. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi All,

    For those of you that missed it, Bruce was on the Radio 4 Today programme this morning. Flying the TP flag and increasing awareness for dementia!

    I've found the recording on the bbc for those that missed it:

    You can find the specific interview by going to the link link
    0833 Millions of people are facing a slow death by dementia.

    Bruce puts so much energy into this forum and still finds time to fly up to the BBC and raise awareness. He is one in a million.

    As far as the interview goes; it is not the easiest of subjects, but I think anyone touched by dementia will empathise.

    Kind Regards
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I've just listened to the play-back, and was very impressed by what Bruce said. He made a number of very valid points, and got them across very clearly.

    I was less impressed by the doctor. Lots of statistics, but seemingly little understanding of the problems. He seemed to be implying (and I may have got the wrong impression), that AD was simply a factor of aging, and the fact that people are living longer means that more will inevitably suffer dementia.

    OK, that's obviously one factor, but surely not the only one? What about young-onset, what about FTD, what about all the rarer dementia, such as John's PPA?

    He seemed to be focussing on the inevitability of the disease in old age, rather than the possibilities for prevention or cure.

    Surely the medical profession should be more aware than this. I hope he listened to what Bruce was saying. Somehow I doubt it!

    Anyway, well done Bruce.
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #7 Grannie G, Nov 15, 2007
    Last edited: Nov 15, 2007
    I`ve listened to it properly now.

    One thing struck me immediately. Bruce was speaking as a carer, John Humphreys showed quite a high degree of empathy and understanding, but the doctor was speaking as an accademic. To him, we were statistics.

    You did Talking Point proud, Bruce. When I think how many of us benefit from it and then think of how many don`t have access, either because they don`t know about it or they don`t use a computer, it make me appreciate it more than ever.
  8. Sandy

    Sandy Registered User

    Mar 23, 2005
    I am usually hurtling out of the house by 8.30, but when I heard John Humphreys say Bruce's name I stopped in my tracks and listened.

    I thought that (as usual) Bruce did an excellent job of describing, with the type of candour that some people must find difficult, what it has been like to travel along the dementia path with Jan for as many years as he has. He also put in a very useful word for TP.

    I personally did not feel that the pairing of a carer of someone with dementia with an academic who was trying to explore the issues for us with an aging population was a fair one (to either party). Perhaps it was an attempt to "zoom in" to one couple's story and then "zoom out" to the picture across the UK in the next 50 years or so, but it didn't work for me - it jarred.

    The issues that the academic raised are no doubt ones that need to be explored, especially when it comes to planning for future provision of services. If anyone is interested, here is the piece that he wrote in yesterday's Guardian:

    Take care,

  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thanks for the link, Sandy. I understand now where the doctor's coming from.

    I agree with him that the drug companies are eager to convert a fatal disease into a chronic one, that way they have a captive group of consumers of their products.

    I wouldn't argue with this either, we'd all like to see more and better care available for our loved ones in the final stages. But I'm a bit uneasy about the 'alternative routes'. Is he hinting at euthanasia?

    I agree with Sandy. The pairing was not a happy one.

    Well done Bruce for getting the carers' viewpoint across.
  10. towncrier

    towncrier Registered User

    Oct 14, 2007
    in the news

    Thanks for the link to the Guardian article. It filled out in more detail the facts behind Today's discussion. There were links in the article to other aspects of the topic, one of them being an online petition to Downing Street which members may feel they woulod like to support. About the broadcast, I was very impressed by Bruce's contribution, so clear, so dignified and so brave.
  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I agree that we did not really want a doctor quoting statistics.
    If a doctor was to be on the programme it should be one who is hands on dealing with dementia patients.
    We do not really wish to know statistics,we want to know where we can get help,what services and support are available.
    Carers looking after a loved one at home for 24/7 need support,lots of it,but where is it?
    The medical profession need to be educated about Dementia,they need to understand the stress and heartbreak that this awful disease causes,not only to the patient and the carer,but to the whole family.
    It would seem that thanks to Bruce and those that are doing all they can to highlight, the problems of , dementia it is receiving more publicity and consequently even the politicians are taking notice.
    Well done Bruce.
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Just a few words in support of the researcher who spoke from the Institute of Public Health at the University of Cambridge.

    We need unemotional people who can draw together raw data from relevant sources, and who can, with the aid of statistics, and the knowledge of how to apply analysis techniques.

    Such people can look objectively at data and, with authority, bring their findings to the public and government's notice.

    But their interest, generally, is in their research. They have not experienced dementia at close quarters for any time at all. [neither, should I say have most doctors and nurses].

    The challenge is not to present results to decimal precision in certain contexts. The challenge for listeners/readers/researchers is to be able to understand the real life significance of the findings.

    The other person's role in the interview was to make known their key findings. Mine was to present the view from the coal face. I'd have loved a much longer time face to face [he was in Cambridge, I was at the BBC HQ in White City] to discuss - on air - the subject, and of course with John Humphrys chairing it.

    When I last worked, for a major American software company supplying statistical software - in my case to universities - I spent much time visiting the researchers and having them tell me the story of their research, and then I would put it in context for case studies that I would publish on the Internet for students and academics to read. It is an interesting challenge.

    Somewhere between dry stats and totally unqualified stories of medical advances in the tabloids lies something important.

    It seems nobody can bridge the gap for us, so we must do it ourselves.
  13. Sandy

    Sandy Registered User

    Mar 23, 2005
    Thanks for giving us the beind-the-scenes view of how things worked that morning.

    My problem with the pairing was that my response to your story was primarly emotional and my response to the researcher's finding was intellectual. This left John Humphrys with a very difficult balancing act for such a short slot.

    I thought the research findings were very significant for long term planning(but they are not altogether new -,,2020957,00.html).
    I wondered how someone responsible (in the government? NHS?) would translate those numbers into future provision for carers/care homes based on the present models of care.

    The other thing that did concern me somewhat was that the Today message board took that issue as the question for Today's debate and it was put as "Millions of people are facing a slow death by dementia. Should the law be changed so that they can die when they choose?" ('m all for open debate in a free society but I'm not likely to be posting on that board/topic any time soon.

    Take care,

  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    That question doesn't seem to make a lot of sense to me. Someone suffering from dementia is, by the nature of the disease, unlikely to be able to make that kind of decision.

    That puts the onus onto the family, and that opens a whole new can of worms.
  15. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hello everyone,

    I would love to be able to read Brucie's interview, but there is a fault on my computer and I don't have sound, and I can't find the transcript. I would also like to contribute my opinions to inform the week-long programme they are planning, but I can't find how to do that. I have to say, I am a bit "thick" when it comes to these things. Please help if you can.

    However, you may all be aware that there is a message board or whatever it is called, on the BBC, showing people's comments, such as the last post which mentioned Euthansia. Late on the day of the programme, I managed to find that message board. I don't know if anyone else did, but from the lack of screaming on this site I can only imagine that they didn't. I did. I was extremely disturbed by a large number of messages appearing there which were totally unacceptable. Following the one re Euthanasia there came a barrage of messages referring to Harold Shipman, what a useful job he had done, remarks about his beard and glasses and the similarity with other people, the whole thing was made to be a flippant laugh at people with dementia-related illness as if the subject was totally unimportant and fair game for a laugh. In the early hours of the morning I complained to the BBC that I found the messages to be "obscene". I looked up the definition in the Oxford Dictionary and it included words such as "offensive, morally repugnant, loathsome", and I reckoned the messages fitted that description. The Beeb will only accept a complaint if it falls into one of their set categories.

    I was pleased to get an email about an hour later (in the small hours) telling me they agreed that the messages contravened their standards and had removed them. When I next checked, they had gone.

    BUT, it begs the question as to why they had allowed those messages to be posted at all. Such messages would not get past our Brucie or the other moderators. They were not expressions of opinion (and I'll talk about Euthanasia with anyone, if they have serious arguments to consider - whether for or against), they were more like a private conversation between a handful of people who clearly had no idea what dementia was about, and had no intention of finding out, but were having a good laugh at our expense.

    I was deeply offended and shocked, and I am glad the majority of you were spared seeing them.


  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    #16 Grannie G, Nov 18, 2007
    Last edited: Nov 18, 2007
    Thank you Margaret.

    It`s comforting to know we are all looking out for each other, and prepared to stand up for our nearest and dearest, to protect them and those connected with them from ignorance.

    Sorry I can`t help you access a Transcript of Bruce`s interview. Perhaps the BBC would oblige.
    Love xx

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