1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Have you had experience with the Mental Health Act?

Discussion in 'Alzheimer's Society notices' started by HarrietD, Sep 12, 2019.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    Our Policy team would like to hear from people affected by dementia who have come into contact with the Mental Health Act.

    The government has said it will introduce a new law to reform the Mental Health Act, and to shape their response to this, the team would welcome feedback from people who have had both positive and negative experiences with the Mental Health Act.

    If you have any experiences to share around this, please feel free to below. The deadline is the end of October, so there's plenty of time to add your comments.

    Thank you :)
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    My Mum has delusions/ delirium/ hallucinations/ confabulation visual & auditory. On going for years (10+) but this is repeatedly recently put down to UTI’s

    Only by dealing direct with the CMHT in Mums area was help & proper diagnosis made available.

    Fluctuating capacity & family issues not previously recognised by mums own GP. Several safeguarding issues raised by other GP’s, paramedics, hospital staff but a crisis point has to be reached before the PWD can access help.

    Mental Health Act - & dementia don’t always act in the PWD bests interests. Repetitive safeguarding issues not enough to flag up in the system.

    Capacity to understand the consequences of decisions needs to have a bigger part to play in the Mental Health Act. The ability to make a decision at that moment in time is not criteria enough for a person to deemed to have capacity. An understanding of the consequences & reality of those needs to be part of the assessment.

    Fluctuating capacity must be regarded as a safeguarding issue & the mental health act doesn’t take this into account, in my 10 year plus experience of both parents having dementia.
    It makes vulnerable adults open to abuse from cold callers as an example.
    Family, friend concerns need to assessed as they deal with the PWD the most, & are more likely to observe normal behaviours & responses.
    Host/ Hostess mode with visitors doesn’t give a true picture of the PWD mental health issues.

    I am happy to go into more details & have medical / family/ friends / neighbours evidence to prove my concerns & experiences with both my parents & the mental health act.
  3. Jacksbestfriend

    Jacksbestfriend New member

    Feb 15, 2019
    Apologies if the following appears to be a somewhat tenuous link to the thread relating to the Mental Health Act. Hopefully, readers will appreciate where I am coming from.

    I am concerned about the readiness of my local Memory Clinic doctors to administer antipsychotic medication to my wife, when the combined wisdom of NHS, NICE, Alzheimer's Society, in the UK and their equivalents in the USA comes out strongly against administering antipsychotics to Alzheimer's Disease patients, all stating that they should only be used where there is a risk of violent behaviour or a risk of harm to the patient or others.

    Last year, my wife, who was diagnosed with Alzheimer's Disease, 3 years ago, started to have hallucinations and the local Memory Clinic consultant prescribed Aripiprazole, to reduce these symptoms. My family and I accepted this treatment, because the consultant advised us that it was necessary. However, after a few weeks, my wife's demeanour and energy levels started to deteriorate and, after 5 months, she was effectively a zombie, sleeping for most of the day and having no energy, or inclination to do anything. She became seriously incontinent, with incontinence pads being completely saturated several times throughout day and night, clearly being so massively sedated that she was unaware of her physical needs. We took her to several lively entertainment events and parties, but she was unable to hold a conversation and keeled over and slept during such events. Her personality had been taken away from her (she was previously lively and full of fun).

    Concerned at this and unable to get a prompt appointment with the local Memory Clinic consultant, we went to a private specialist consultant, who had seen my wife after her initial diagnosis. He wrote to our GP, recommending that my wife was weaned off the Aripiprazole, whilst being monitored for any recurrence of hallucinations. This was done and, thankfully, there was no recurrence of the hallucinations, in the ensuing 6 months, the private consultant subsequently stating that they may well have been a temporary phase in my wife's illness.

    In the past few months, my wife has been suffering bouts of weepiness, usually related to not knowing where her parents are (both have deceased, but my wife is no longer aware of this). We realised that she had been on the same antidepressant for 3 years and we thought it may have been time for a review of this medication. Our GP referred us back to the local Memory Clinic, where my wife was immediately prescribed the antipsychotic drug, Risperidone. After only two doses, it was evident that the drug was totally unsuitable for my wife, leaving her bereft of memory, confused and highly agitated. We immediately stopped giving her the medication and, when we went back to the local Memory Clinic, we were advised that my wife had been diagnosed with psychosis, on the basis of a "score chart". We were extremely concerned when we were told that a major factor in this diagnosis was my wife's apparent "refusal" to come into the previous meeting at the Clinic. This was completely untrue. I had asked the doctor if my daughter and I could speak to him alone, whilst my wife waited outside with a nurse, because we don't like talking about her condition and symptoms in front of her, because it clearly distresses her. (Why do mental health practitioners do this???). The consultant gave us a blank copy of the score chart, which I copied and later at home, my daughter and I independently worked through copies of the score chart. Even taking several "worst interpretation" scenarios, both of us obtained a score less than half of that claimed by the consultants in the Memory Clinic (I should stress that the questions on the chart were not technical, or difficult to interpret, but purely relating to my wife's everyday actions, exactly as we had expressed to the consultant's assistant in the first meeting).

    The consultant has recently written to our GP, in a manner which suggests that the family has been somewhat uncooperative. We obtained a copy of this letter from his secretary and, consequently, we have asked the Trust to change my wife's consultant, ideally to a completely different Clinic. We have subsequently heard from several other families who have made similar decisions, because of their concerns over treatment received by a relative, in this Clinic.

    This is where my concerns relate to the Mental Health Act (apologies for the tortuous route to get here!). Although my daughters and myself have Lasting Power of Attorney, registered with our GP, if we stayed with the same Memory Clinic Team, it appears that our wishes and concerns could be overridden by the Memory Team. If my wife ever has to go into hospital, or into care, she could be put back on some form of antipsychotic drug, under instruction from the Memory Team Consultant(s), despite the strong recommendations from NHS, NICE, Alzheimer's Society, Alzheimer's Association (USA) and other august bodies and any objections from her family.

    Have any other carers experienced this apparent determination to use antipsychotic drugs? Any advice on this would be most welcome.
  4. Lizzy97

    Lizzy97 New member

    Nov 24, 2018
    My mother was diagnosed with Alzheimer's 14 years ago. I have cared for her for the last 13 years. At the same time she was 'declared' as 'end of life' which meant that all medical care was withheld other than that required for pain relief and comfort. I have only recently become aware of the Mental Health Act by an advocate that I recently acquired, for my mother. My experiences of dealing with health professionals and adult social care has been, to say the least, very frustrating. It felt that everyone had some kind of power or jurisdiction over my mother. The surgery took my mother off the mental health team - no explanation - even though they had been the only people who had offered advice or help. There are no Alzheimer's resources in my area so the few hours she had in a group each week was something concrete and of value. This had to end as transportation become too difficult.They took me off 'giving her medications' although she isn't on any other than Laxido, they told me not to call the surgery as my mother was 'end of life' and then they came around and told me that she had to go into a nursing home. I arranged two meetings with them - one with the administration and when that didn't clarify anything, one with a doctor. It was clear that they felt they could make all the decisions for my mother but there was no explanation, justification or reasons given for their position. I have come to belief that it is the Mental Care Act that gives every doctor, nurse or social worker the idea that they can make these decisions for their patients as they feel they have the responsibility for their welfare which they regard as a burden. I don't know the answer. It has been a nightmare. I feel that the Mental Health Teams together with advocates might be the people in the best situation to protect and represent vulnerable people. Under the current regulations the only solution for the professionals is for the patient to die.
  5. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    Thanks @DesperateofDevon, @Jacksbestfriend and @Lizzy97 for being so open about sharing your experiences so far, especially given how difficult it sounds like those experiences have been. I really appreciate it.

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