1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

The fightback begins here!

Discussion in 'Dementia-related news and campaigns' started by Soroptimist, Aug 13, 2019.

  1. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    Since my mum went into residential care in April we have had lots to deal with, both emotionally with my mum's decline and practically with having to deal with things like POAs and selling my mum's house. BUT I now have time to do my bit to try to change things. I am still so angry at the situation for dementia sufferers and their families - and one thing I can do is tell my story.

    Here is (an anonymised version of) the letter I have sent to the powers that be. It's made me feel better to get my voice out there. Perhaps others would like to add their letters to this thread?

    I am writing to tell you about my mum, who has been living in your constituency since 2005.

    My mum was a Maths teacher for around 40 years, only taking time out for the first few years after my sister and I were born. She was a very enthusiastic and competent teacher and she also used up much of her spare time to support her students with Duke of Edinburgh expeditions. When she retired she was thanked for this work by the County Council.

    Since retiring she kept very busy including volunteering for Oxfam, growing vegetables, bell ringing, taking A level English and French (and getting A's for these), playing the 'cello and violin. She is a very sociable person and was always helping others out, including helping neighbours' children with Maths tuition.

    She has never been in hospital except to give birth to my sister and me.

    Unfortunately she had been developing dementia for several years, and since April has been living in a specialist care home for people with dementia.

    My experiences dealing with doctors, Social Services and charities have highlighted to me that the way which dementia is approached is completely inadequate and has to change. There are barriers at every turn, from getting a diagnosis to getting help from Social Services to getting help from charities. On top of this, my mum has to pay for all of her care as she has more than £23,500. This would not be the case if dementia was treated as the medical condition that it is, rather than seen as a social care issue. If my mum had developed something medically treatable like cancer she would not have to pay for her care.

    We had enormous problems getting a dementia diagnosis from the local GP surgery as they would not do home visits unless the patient was immobile, but, due to the dementia, my mum would refuse to go to the surgery. The GP surgery would not confirm if they had already diagnosed dementia due to “data protection”. This meant we could not access services designed for dementia sufferers. Effectively the GP was blocking us being able to get support for my mum – completely the opposite to acting in my mum's best interests. We eventually found out by calling the local Memory Clinic who checked their files and told me that my mum had been diagnosed with dementia at least a year previously!

    The services promoted by charities are often volunteer led and dependent on local capacity. Once we did get confirmation of my Mum's diagnosis we were put on the waiting list for a service where volunteers spend time with dementia sufferers, but after six months we still had not been assigned a volunteer. It feels wrong to criticise a service when it is run by volunteers, however I believe that it is wrong to promote a service that is in practice not accessible. It gives the impression that there is more support available than is the case.

    The local Social Services are completely stretched, we had to wait months to get an assessment of my mum. They couldn't help in any case, as they were not able to personalise their approach to respond to my mum's needs. They gave us a list of local care providers and left us to it.

    I hope you agree with me that this situation needs to change. Boris Johnson said last month that “My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the cost of care”. We are in the process now of selling my mum's house as we need it to fund her care home fees which are over £5,000 per month.

    My mum is lucky in that she has family who have been acting on her behalf. What about all the vulnerable elderly people in your constituency who do not have family who are able to do this? I worry for them, as the rates of dementia are increasing and will do so further with the ageing population.

    Please let me know what you plan to do in this area, and how you will help Boris Johnson to make good his promise to fix social care for the people with dementia who live in your constituency.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,752
    Female
    Scotland
    Excellent letter @Soroptimist. Until we are involved with dementia it is a much misunderstood illness. Carers are driven to the wall trying to help with circumstances they were never trained or indeed expected to carry out. Great chunks of carers lives are lost during these years never to be regained and in many cases affecting the health of the carers too. Good citizens who contributed to national insurance and tax and to the common good in many ways are effectively bankrupted by the costs of care.

    Yes the overall costs are huge but we must have honest and open discussions and learn from other countries and find a way to deal with this ever growing horror story that many of us are living through.
     
  3. daveyshadow

    daveyshadow Registered User

    Jan 14, 2015
    30
    Wow, brilliant letter, points out so many of the issues that family and friends have to deal with when their loved ones develop this disease.
    I think we need, don't know it may already have been done, to get people like Boris and Matt Hancock along with Jeremy Corbyn and Jonathan Ashworth etc to sit for a day on this forum and read everyone's posts and get an idea of the issues, hurdles and real anguish of all involved. maybe they will then be able to come up with some policies that can help everyone affected.
     
  4. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    Thanks marionq. It's a problem that will just get worse unless things change. I agree it has to be faced head on, not parked as it has been for so long.
     
  5. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    Thank you daveyshadow. I looked at what Alz UK are doing about campaigning and in July they did a brilliant looking event with MPs - with 12 people's dementia stories, and a photo of Matt Hancock pledging his support to help. I hope the pressure can be kept up to make sure they make good their promises. You are right, it would be a good idea for them to spend some time on this forum to understand what people are going through. And yes the policies need to be developed cross-party - it's too easy for this to get kicked in the long grass otherwise.
     
  6. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    Excellent letter highlighting the issues we are all facing. The situation MUST change and very soon. I really feel for everyone who has had to sell the family home, it's just an awful way to discriminate against people with an illness.
    We are now involved with SS and I have the financial forms to fill in and dreading it in case we have to sell the house my mum has worked so hard for. Come on Boris, put the situation right!
     
  7. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    Thanks @Cazzita

    I think Boris Johnson is looking at this - I think it's a good time to bombard Boris and our MPs with our experiences, as Boris is new in office and will want to show he's doing something as a new PM. See this briefing doc published yesterday:

    https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-8002

    The end of the doc is quoted here:

    In Boris Johnson’s first speech as Prime Minister on 24 July 2019, he said:

    "My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the costs of care and so I am announcing now – on the steps of Downing Street – that we will fix the crisis in social care once and for all with a clear plan we have prepared to give every older person the dignity and security they deserve".

    No indication was given by the Prime Minister as to when the plan would be published. On 31 July 2019, the Financial Times reported that “a consultative paper that laid out options for funding care for elderly and disabled people but which had languished unpublished as Brexit consumed ministerial attention” – presumably the social care Green Paper – had “already been ditched”.

    The reason cited was that the new Prime Minister, Boris Johnson, “sought to inject more urgency into the process”. In its place, the FT reported, would be a White Paper, the publication of which was “expected in the autumn” and would propose “a clear course of action to address the crisis”.
     
  8. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    Yes, it is indeed a good time to bombard them. I have signed a couple of petitions but I am surprised that less than 223,000 have signed it. I guess people aren't really aware of the dementia care crisis until it happens to them or their families. I had no idea myself until my mum had it. So, do we write to the PM individually or the local MP? Not sure what to do... Thanks x
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #9 Palerider, Aug 15, 2019
    Last edited: Aug 15, 2019
    Amazingly mums MP has finally replied to me via a personal email, I didn't expect - saying she is willing to represent mum if there are further issues with care delivery in the area. I have replied with a link to this document: Social care funding: time to end a national scandal

    https://publications.parliament.uk/pa/ld201719/ldselect/ldeconaf/392/392.pdf

    ...and suggested she has some reading to catch up on :D
     
  10. witts1973

    witts1973 Registered User

    Jun 20, 2018
    638
    Male
    Leamington Spa
     
  11. witts1973

    witts1973 Registered User

    Jun 20, 2018
    638
    Male
    Leamington Spa
    I think they will be expecting people to go the home equity route so they get to stay in the home and get a very poor deal from the sharks that buy the property,I'm a full time carer at home for mum,lived here for 46 years,and I'm quite expecting to be kicked on to the streets if they ever decide that mum can no longer be looked after at home by me.
    It quite feels like the end for me,I'm doing my very best for mum,but I'm waiting for that dreaded day that the accountants say "Get on your bike"it's hard enough being a carer,but the fear of losing my home fills me full of dread:(
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    290
    Fantastic letter!
    It’s horrible how a PWD is seen by GP & SS. At Mums hospital discharge to home meeting the DN was more concerned with who would be taking charge of the funding rather than resolving issues. So of course SS are happy to pick up that as the PWD pays until there is hardly any of their life Savings left.
    What happened to the Dementia fund on diagnosis? Or did I totally dream that one?
     
  13. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    That is so good to hear - well done!
     
  14. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    What a disgusting situation the state puts us in! Diabolical. Don't give up hope as it may be around the corner - changes have to be imminent this time, surely. If you are over 60, they won't kick you out :)
     
  15. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    Wow, that is some reading to catch up on! Thanks for sharing this - it is such a stark tale of woe and injustice - makes my blood boil! I am hoping (and praying) for change soon, it is all unbearably unfair on so many people x
     
  16. witts1973

    witts1973 Registered User

    Jun 20, 2018
    638
    Male
    Leamington Spa
    Hi I'm 46 so I don't meet any of the criteria my son has lived here 50% of the time since the age of 2 and he's 16 so it's awful for him too,this home has been his secure place,he has lived in 7 homes with his mother
     
  17. Cazzita

    Cazzita Registered User

    May 12, 2018
    431
    I am sorry to hear this - it's very unfair :(
     
  18. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    Well done on getting a response, that's great news! I'm still struggling with my mum's MP as I am not a constituent so she won't respond to me.
     
  19. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    I'm writing to all of em! My mum's MP, my MP, Boris Johnson, and some other ministers like Matt Hancock. I sign petitions and send stock emails to MPs but I never get a response to them, so I think a personal letter is important to do too. I guess it's hard to get everyone mobilised on these things, especially when people have caring to do which is often more immediately important.
    MPs details are on https://www.theyworkforyou.com
     
  20. Soroptimist

    Soroptimist Registered User

    Jun 10, 2018
    28
    This sounds like a horrible situation to be in. I hope things get sorted so you don't have to lose your home.
     

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