Alzheimer’s Society – a peculiar kind of charity?

There’s a disturbing piece in the current issue of Private Eye (No.  1284; 18 March 2011 – 31 March 2011; ‘In the Back’ section; page 30) about the Alzheimer’s Society.

The article’s not available online, only an online taster:

Dementia Care – Fear and loathing at the Alzheimer’s Society as volunteers reject the charity’s new-found “professionalisation”, saying it ignores local needs.

According to the article, volunteers who have been fundraising for years via local Alzheimer’s Society branches are now leaving to start their own breakaway groups.  It would appear that the Alzheimer’s Society decided to abolish 240 branch committees, merging them into large regional centres, and the Society has apparently seized control of all the funds within those branches, and also the branch property.

If the content of the Private Eye article is accurate – and it is rare for The Eye to get it wrong! – it is shocking.

The Eye states:

In addition, some members who challenged decisions of their new managers were treated appallingly, sometimes locked out of the premises they had run for years.

One is Ernie Thompson, who started the Sunderland branch in 1987 and chaired it until it had an annual turnover of around £400,000.  His reward for years of unpaid work?  Changed locks and “everything ransacked and seized”, he says.

So much for charity!  David Cameron must  be invited to say whether this strange action on the part of a dementia charity falls within or without The Big Society.

No wonder Fund razing is Private Eye’s chosen headline.

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10 Comments

Filed under dementia, dementia care

10 responses to “Alzheimer’s Society – a peculiar kind of charity?

  1. V. M.

    The Alzheimer’s Society continues to help and support people with dementia and those who support them across the whole country. The staff who work for the Society work tirelessly and are passionate about providing the best quality support possible to people living with dementia and to suggest anything else is ludicrous and demeaning. It is sad and unfortunate that previous volunteers many of whom received support from the Alzheimer’s Society now feel excluded. However The Alzheimer’s Society remains a volunteer led organisation and gratefully acknowledges that it could not provide the range of services it does without the support of volunteers. I urge people to find out themselves what the Alzheimer’s Society has meant to them and their loved ones and not to rely on the one sided views of a biased minority.

    • careintheuk

      Thanks for your comment, V.M.

      I don’t for one moment doubt that, like most charities, the Alzheimer’s Society gratefully acknowledges the support of its volunteers. Yes, it is sad if previous volunteers have been excluded.

      Questions should be asked, if there are so many breakaway groups emerging from just this one charity. ‘Big Society’ is allegedly all about localism, rather than centralisation, so the Alzheimer’s Society needs to answer questions, especially as it is funded by donations, contributions from volunteers, local authorities and government, i.e. the taxpayer in one form or other, plus the likes of Tesco and Santander now. So we’re not talking small fry when it comes to a charity.

      Personally, I would have been more persuaded if the Alzheimer’s Society had managed to respond to the Private Eye article. After all, someone who had a diagnosis of Alzheimer’s three years ago now and who is also a volunteer managed to get a letter to the Eye in the 2 weeks after publication of the article. (It’s possible that the Alzheimer’s Society did respond but for some reason it wasn’t published last week, so all may be revealed in the next issue.)

      Before the article, I had no previous knowledge of the events in Sunderland, Winchester, Guernsey, Jersey, Cornwall, Kent, or Barnsley – but your description of ‘one sided views of a biased minority’ leads me to suspect that you may have closer connections to one or more of those nationwide branches. If you are employed by the Alzheimer’s Society, I apologise if I trod on your toes. If you are a volunteer – as are many people across the country – you will hopefully support other volunteers asking questions.

  2. It concerns me deeply that Kate Moore, from the Alzheimer’s Society is part of the Dementia and Care Champion Group, as I have serious reservations about her integrity.

    I used to manage the Alzheimer’s Dementia Café in Lambeth – a truly thriving service which the Society showcased, over and over, including as part of ITV’s “Donate a Day” campaign, but then closed.

    The community of people who used to meet at the Café campaigned to keep it open, and even asked the Society to pay for just the salary of the 1/2 time coordinator’s and over-heads, and that they would form their own Club and fundraise to cover all the other costs. Their petition, however, did not receive a reply.

    Kate Moore came to the Café to meet me on 07 March and, although a delegation of 17 people with dementia, their carers, and volunteers came because they wanted to talk to her personally, she insisted to talk to me alone, behind closed doors. I won’t mention how I was talked to behind those doors, as it is my intention to bring it up elsewhere. I shall just say that the coldness and determination with which Kate Moore’s told me that the decision to close the Café had been taken in the interest of the people across the country, and the nations (!) shocked me.

    She told me that she expected me to cooperate with the Society, by informing everybody else at the Café that the decision would NOT be reversed, and that the Café would definitely close on 28 of March. She said that she did not want them to waste their time by sending further letters to the COE and to the MPs, as they had been doing: she said that I should try and stop them from damaging the reputation of the Alzheimer’s Society in their futile attempt to make their case to external parties.

    She also said that the last day of employment would definitely be the 31st of March, as my services were no longer required: she said that the Society would be sending support workers to the sheltered home where we meet for a few weeks after the closure, just in case somebody had misunderstood the message, and kept showing up.

    The South London Press visited the Cafe’ on the same day as Kate Moore, and reported the news: http://www.slp.co.uk/news.cfm?id=9334&searchword=dementia.

    The people with dementia and the carers who came to the Café, but not the volunteers, received a letter confirming that the Café would definitely close a few days later. In fact, the volunteers never received as much as a thank you note. See, for instance, Claire McConville’s comment on the Alzheimer’s Society’s Facebook’s wall on 17 April: https://www.facebook.com/alzheimerssocietyuk?ref=ts.

    The community at the then Café had been meeting for over 3 years, and we all decided that we would endeavour to find the funds necessary for us to keep the group functioning at full capacity after the Café’s closure. So I did write to the local MP –Kate Hoey– who wrote back, visited the Café, and promised she’d help us find the money we needed.

    So, having been informed of my impending redundancy, I took 4 non-Café days as annual leave, as I very much needed the time to make all the arrangements necessary for the group to continue to meet, without interruptions (like arranging for all the volunteers to be insured by the local time bank, initiate some fundraising activities, and create new partnerships).

    I told my manager I wanted to take the annual leave on the 14th of March, and he told that it was perfectly fine. The following day, however, he sent me an email which –contrary to all the previous communications we had had– informed me by means of an attached letter of redundancy– that my redundancy notice started on the 14th of March –which was the date on the letter– and that my last working day would be the 14th of April.

    I had always had a good relationship with my line manager. So I replied, in the most friendly of manners with what I thought as a good-natured joke “wouldn’t it be funny, if they insisted I had to work my notice, under the circumstances?”.

    I genuinely thought it would have been quite funny if the Society were to insist I should work my notice to implement their exit strategy –which consisted of reminding people that the service had been discontinued– thus preventing me from fulfilling my promise to the group that I would make all I could to keep the meetings going, without interruption.

    On Tuesday 20 March I was on annual leave and, on Wednesday 21 March, I woke up very early –like at 4.00– to work on organising some fund-raising activities for the new group, and I checked my work email, out of habit, to find a message –which was sent by my line manager the night before, at 19.30 pm.

    It had a letter attached, which said:

    “20th March 2011

    Dear Simona

    Further to my email to you dated 15th March 2012, and your redundancy notice letter dated 14th March 2012 whereby it was confirmed that your last day of employment would be 31 March 2012, I have decided to bring forward your final date of employment with the Society to Tuesday 20th March.

    I have not taken this decision lightly, but do feel that this is the best course of action for the Society. Your recent actions with regards to the Dementia Café, communications we have received from you and the way you are choosing to engage with us at this moment in time is not appropriate Society behaviour. As well as this, you yourself do not feel that the Society should be asking you to work your notice, since your response to me, sent to me via email on the same date (15th March) at 13:28 states that you felt that it would be funny if the Society insisted that you work your notice. Because of all these reasons, your employment with the Society will end on Tuesday 20th March.

    All outstanding monies owed including notice pay and annual leave due to you will be paid in lieu.

    You should return all property belonging to the Society, and all hard and soft copies of documents containing any confidential information relating to the Society to me by Friday 23rd March.

    As you are no longer a member of the Society, I would appreciate that you refrain from using Society premises from the date of this letter. I understand that there is one café day left before it closes, however, as you will no longer be an employee, we are happy to welcome you as a guest to the Lambeth Healthy Ageing café as we appreciate that you may want to interact with the café service users and meet potential funders as we are aware that you are seeking funding.. We will have staff on hand to ensure the smooth running of the service as we do not wish to bring any further distress on to them or their carers and would hope that you respect this decision going forward.

    I would like to remind you that the Healthy Ageing Café is a Society service and the Society has a very clear exit strategy in place, so that we are best supporting people with dementia and their carers, through this difficult period of time. I am sure that you will appreciate that we do not wish to confuse or bring any further distress to those individuals who use the Café, therefore, I would encourage you strongly to leave the Society to deliver this exit strategy in the best way possible, to ensure that we are treating people with dignity and respect, in line with Society values. We very much hope that you can respect this decision, if not for the Society but for those people who use the café.

    [name of my line manager omitted]”

    What’s most incredible about this letter is not so much my work had continuously and consistently been praised (prior to me pleading management to listen to the people at the Café and help them keep the group going), it is that –as my line manager had always known– I make the travel arrangements for the people with dementia who come to the Café on their own on Wednesday mornings, and that no arrangements were made so that the job would be done by somebody else –after the termination of my employment– the night before. It was me –if fact– who made all the phone calls involved to keeping the Alzheimer’s Healthy Ageing Café functioning until it finally closed. They did send a support worker along though, to cover the temporary vacancy left by me being removed from my post. Incidentally, I was also the “key-holder” for the office (the one who would have had to wake up and go and offset the alarm, in case the security alarm went of during non office hours, until responsibility was transferred to somebody else, the following Monday.

    I was an very committed employee, and I found the way I was treated hurtful, but it was what I had to suffer in order to be able to honour my commitment to the people with dementia who had been trusting me for years.

    The group has changed name (it is now called the Healthy Living Club @ Lingham Court), and it is in no danger of folding. The “transition” was smooth, with no loss of service users or volunteers, and we have had three new referrals since we “relaunched ourselves”, on the 4th of April.

    One of the Alzheimer’s Society support workers joins us, as a volunteer, to lead a singing group during his lunch-break, every too weeks.

    I’d like him to come in professional capacity too, to run an information surgery once a month, perhaps. The carers would like him to come and, it is much more cost and time efficient for him to provide information at the new Club than having to go to see people, individually, at home. So I very much hope that the Alzheimer’s Society won’t prevent him from coming, when I’ll ask.

    I have all the written evidence I’d need to substantiate all I said, should the Alzheimer’s Society claim that I am misreporting what happened.

    Simona Florio

  3. Simona Florio

    It concerns me deeply that Kate Moore, from the Alzheimer’s Society is part of the Dementia and Care Champion Group, as I have serious reservations about her integrity.

    I used to manage the Alzheimer’s Dementia Café in Lambeth – a truly thriving service which the Society showcased, over and over, including as part of ITV’s “Donate a Day” campaign, but then closed.

    The community of people who used to meet at the Café campaigned to keep it open, and even asked the Society to pay for just the salary of the 1/2 time coordinator’s and over-heads, and that they would form their own Club and fundraise to cover all the other costs. Their petition, however, did not receive a reply.

    Kate Moore came to the Café to meet me on 07 March and, although a delegation of 17 people with dementia, their carers, and volunteers came because they wanted to talk to her personally, she insisted to talk to me alone, behind closed doors. I won’t mention how I was talked to behind those doors, as it is my intention to bring it up elsewhere. I shall just say that the coldness and determination with which Kate Moore’s told me that the decision to close the Café had been taken in the interest of the people across the country, and the nations (!) shocked me.

    She told me that she expected me to cooperate with the Society, by informing everybody else at the Café that the decision would NOT be reversed, and that the Café would definitely close on 28 of March. She said that she did not want them to waste their time by sending further letters to the COE and to the MPs, as they had been doing: she said that I should try and stop them from damaging the reputation of the Alzheimer’s Society in their futile attempt to make their case to external parties.

    She also said that the last day of employment would definitely be the 31st of March, as my services were no longer required: she said that the Society would be sending support workers to the sheltered home where we meet for a few weeks after the closure, just in case somebody had misunderstood the message, and kept showing up.

    The South London Press visited the Cafe’ on the same day as Kate Moore, and reported the news: http://www.slp.co.uk/news.cfm?id=9334&searchword=dementia.

    The people with dementia and the carers who came to the Café, but not the volunteers, received a letter confirming that the Café would definitely close a few days later. In fact, the volunteers never received as much as a thank you note. See, for instance, Claire McConville’s comment on the Alzheimer’s Society’s Facebook’s wall on 17 April: https://www.facebook.com/alzheimerssocietyuk?ref=ts.

    The community at the then Café had been meeting for over 3 years, and we all decided that we would endeavour to find the funds necessary for us to keep the group functioning at full capacity after the Café’s closure. So I did write to the local MP –Kate Hoey– who wrote back, visited the Café, and promised she’d help us find the money we needed.

    So, having been informed of my impending redundancy, I took 4 non-Café days as annual leave, as I very much needed the time to make all the arrangements necessary for the group to continue to meet, without interruptions (like arranging for all the volunteers to be insured by the local time bank, initiate some fundraising activities, and create new partnerships).

    I told my manager I wanted to take the annual leave on the 14th of March, and he told that it was perfectly fine. The following day, however, he sent me an email which –contrary to all the previous communications we had had– informed me by means of an attached letter of redundancy– that my redundancy notice started on the 14th of March –which was the date on the letter– and that my last working day would be the 14th of April.

    I had always had a good relationship with my line manager. So I replied, in the most friendly of manners with what I thought as a good-natured joke “wouldn’t it be funny, if they insisted I had to work my notice, under the circumstances?”.

    I genuinely thought it would have been quite funny if the Society were to insist I should work my notice to implement their exit strategy –which consisted of reminding people that the service had been discontinued– thus preventing me from fulfilling my promise to the group that I would make all I could to keep the meetings going, without interruption.

    On Tuesday 20 March I was on annual leave and, on Wednesday 21 March, I woke up very early –like at 4.00– to work on organising some fund-raising activities for the new group, and I checked my work email, out of habit, to find a message –which was sent by my line manager the night before, at 19.30 pm.

    It had a letter attached, which said:

    “20th March 2011

    Dear Simona

    Further to my email to you dated 15th March 2012, and your redundancy notice letter dated 14th March 2012 whereby it was confirmed that your last day of employment would be 31 March 2012, I have decided to bring forward your final date of employment with the Society to Tuesday 20th March.

    I have not taken this decision lightly, but do feel that this is the best course of action for the Society. Your recent actions with regards to the Dementia Café, communications we have received from you and the way you are choosing to engage with us at this moment in time is not appropriate Society behaviour. As well as this, you yourself do not feel that the Society should be asking you to work your notice, since your response to me, sent to me via email on the same date (15th March) at 13:28 states that you felt that it would be funny if the Society insisted that you work your notice. Because of all these reasons, your employment with the Society will end on Tuesday 20th March.

    All outstanding monies owed including notice pay and annual leave due to you will be paid in lieu.

    You should return all property belonging to the Society, and all hard and soft copies of documents containing any confidential information relating to the Society to me by Friday 23rd March.

    As you are no longer a member of the Society, I would appreciate that you refrain from using Society premises from the date of this letter. I understand that there is one café day left before it closes, however, as you will no longer be an employee, we are happy to welcome you as a guest to the Lambeth Healthy Ageing café as we appreciate that you may want to interact with the café service users and meet potential funders as we are aware that you are seeking funding.. We will have staff on hand to ensure the smooth running of the service as we do not wish to bring any further distress on to them or their carers and would hope that you respect this decision going forward.

    I would like to remind you that the Healthy Ageing Café is a Society service and the Society has a very clear exit strategy in place, so that we are best supporting people with dementia and their carers, through this difficult period of time. I am sure that you will appreciate that we do not wish to confuse or bring any further distress to those individuals who use the Café, therefore, I would encourage you strongly to leave the Society to deliver this exit strategy in the best way possible, to ensure that we are treating people with dignity and respect, in line with Society values. We very much hope that you can respect this decision, if not for the Society but for those people who use the café.

    [name of my line manager omitted]”

    What’s most incredible about this letter is not so much my work had continuously and consistently been praised (prior to me pleading management to listen to the people at the Café and help them keep the group going), it is that –as my line manager had always known– I make the travel arrangements for the people with dementia who come to the Café on their own on Wednesday mornings, and that no arrangements were made so that the job would be done by somebody else –after the termination of my employment– the night before. It was me –if fact– who made all the phone calls involved to keeping the Alzheimer’s Healthy Ageing Café functioning until it finally closed. They did send a support worker along though, to cover the temporary vacancy left by me being removed from my post. Incidentally, I was also the “key-holder” for the office (the one who would have had to wake up and go and offset the alarm, in case the security alarm went of during non office hours, until responsibility was transferred to somebody else, the following Monday.

    I was an very committed employee, and I found the way I was treated hurtful, but it was what I had to suffer in order to be able to honour my commitment to the people with dementia who had been trusting me for years.

    The group has changed name (it is now called the Healthy Living Club @ Lingham Court), and it is in no danger of folding. The “transition” was smooth, with no loss of service users or volunteers, and we have had three new referrals since we “relaunched ourselves”, on the 4th of April.

    One of the Alzheimer’s Society support workers joins us, as a volunteer, to lead a singing group during his lunch-break, every too weeks.

    I’d like him to come in professional capacity too, to run an information surgery once a month, perhaps. The carers would like him to come and, it is much more cost and time efficient for him to provide information at the new Club than having to go to see people, individually, at home. So I very much hope that the Alzheimer’s Society won’t prevent him from coming, when I’ll ask.

    I have all the written evidence I’d need to substantiate all I said, should the Alzheimer’s Society claim that I am misreporting what happened.

    Simona Florio

  4. Simona Florio

    I am sorry I posted the same comment twice, in error.

    • careintheuk

      No problem.
      I’ve decided to leave both posts untouched by me.
      I don’t like ‘behind closed doors decisions’ – they have contributed to more problems in my own life than I could ever have imagined would surface, so I’m supporting open, honest and decent decision making.
      I know nothing of the local problems you’re dealing with – I’ve got enough of my own to contend with, so selfishly I won’t comment on your post.
      As long as all things in the world of care come out from behind those closed doors, that’s fine by me.

  5. Simona Florio

    Thank you. I’d also like to bring it out in the open that this email which I wrote to Kate Moore, and which I copied to all the people she did not meet never received a reply:

    Ms Moore,

    People were looking forward to meeting you on Wednesday. So –as you
    are able to understand– your determination not to meet them,
    exacerbated the general upset.

    A delegation of 14 people (6 people with dementia, one paid and one
    unpaid carer, the owner of a small residential home, and 5 volunteers)
    went through considerable trouble to come in early– to meet you:
    having been told that Ms Hughes had passed their proposal to keep the
    HAC open on to you, they were keen to ask you the questions I had sent
    you in advance earlier in the morning.

    These people were told that you and Maggie wanted to talk with me,
    alone, first –which must have felt degrading enough: it’s people with
    dementia and those who care for them who should be at the centre of
    what we do and, although I have been trying my best to represent their
    views, this was an opportunity for you to talk to them directly. Why
    didn’t you?

    We were supposed to meet at 10 am but, as I lost my purse earlier in
    the morning –which contained my money and my Oyster card– I ended up
    having to walk from the office. I phoned a volunteer to say I would be
    late, but you insisted that you wanted to meet me first, even though
    these people were there already.

    One volunteer said that he had come in to meet you especially, as he
    had work commitments on that day. So you decided to meet with him
    alone, with all the others waiting outside the door. Why?

    I finally arrived at 10.30, and our meeting lasted 45 minutes, after
    which you spent another few minutes (perhaps 15) with Maggie, leaving
    everyone waiting: well, they thought that they were waiting when, in
    fact, they were being ignored: in the end, you left without even
    letting them know you were leaving.

    By the time you left, most service users and volunteers had arrived,
    and the great majority would have loved to meet you. Yet you did not
    even come into the main area, to have a look at what we do.

    I appreciate that you don’t know the users and couldn’t, therefore,
    decide whether communicating management’s decision that the HAC would
    definitely close to all concerned, there and then, would be the best
    course of action.

    However, the delegation of users, carers and volunteers who came in
    early, to meet you, deserved to be told about the decision directly,
    and they feel very aggrieved. A carer wrote an email to me saying that
    he feels hurt, profoundly.

    Your behaviour reflects very badly on all of us who work for the
    Society, and I believe its my duty to bring it to light to Ms Hughes
    (which I am copying in), as well as to the trustees (to whom I shall
    be writing separately), so that they may take whatever action they
    consider most appropriate.

    Not all the 14 people who came to see you on Wednesday have email
    addresses, but they gave me their permission to pass their contact
    details to the person who will be investigating the matter: I trust
    that the Society will want to hear their views on at least this
    matter.

    For the time being, I am attaching the thread of the emails we
    exchanged prior to the “meeting” on Wednesday morning.

    Yours sincerely,

    Simona Florio
    Healthy Ageing Cafe’ Coordinator, Lambeth

  6. careintheuk

    Simona,
    My stats tell me there has been a considerable increase in the number of people viewing this particular topic on my blog since your first comment, so I think you’ve brought your problem into the open. I do wish you well, and I hope you will get clarity and answers, but I have absolutely no connection to your own situation, and no connection to the Alzheimer’s Society, so I have no way of knowing the full story.
    Good wishes to you and your colleagues.

  7. Simona Florio

    Thank you very, very, much for your reply. Feeling heard means a lot to all of us

  8. Pingback: The Alzheimer’s Society – Sick Joke? | Care in the UK

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