Have you had experience with the Mental Health Act?

HarrietD

Administrator
Staff member
Apr 29, 2014
5,521
London
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.

Thank you :)
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
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.
 

Jacksbestfriend

New member
Feb 15, 2019
2
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.
 

Lizzy97

New member
Nov 24, 2018
3
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.
 

barryg

Registered User
Oct 6, 2014
10
I had experience of the Mental Health Act in Scotland. The court had granted me Welfare Guardianship which included the power to decide where my mother should live, how much nursing care was appropriate for her, and to consent to medical treatment. But I was astonished and annoyed when the Health and Social Care Partnership were able to trump those powers using the Mental Health Act. They wanted my mother to go into a Nursing Home, whereas she was very happy at home in my care. The fact that I was opposed to the medical advice of the Partnership's psychiatrist was used to find me unsuitable to be my mother's Guardian, and Guardianship was given instead to the Social Work Department, against my mother's vehement opposition, because they were in support of their own medical advice! My mother was detained in hospital for the last 2 years of her life while I went on a fruitless legal campaign to try to get her out. I was constantly told that my case was pointless without a medical opinion to back it up, which was next to impossible because I could not find a psychiatrist who was willing to challenge the opinion of the Partnership's psychiatrist. They had such control over my mother that she was allowed out of the dementia unit only once in 22 months; my access to her was restricted to 40 minutes twice per week for the first 7 months. I was refused a consultation with the visiting GP; a referral for physiotherapy by a sympathetic geriatrician was cancelled; and that geriatrician was refused consent to re-examine my mother when her mobility deteriorated further. She died in hospital. My appeals got all the way to the Court of Session, but even they refused to look at the facts of the case, or to interfere with the decisions which were made below them.
 

Jacksbestfriend

New member
Feb 15, 2019
2
I am pleased to report that we were able to change to a different consultant in the same Mental Health Team, after we raised a complaint with the hospital's Patient Experience Team. What a difference! From the outset, the new consultant has reassured us that he wants to work with the family and include us in all decisions he and his team make. Yes, it is also clear that, even though I have Lasting Power of Attorney, his team will always have the final say, under the Mental Health Act. However, he has been as good as his word and he has phoned me and arranged meetings with myself and my immediate family, whenever there has been a need to make a significant change in medication, or in care arrangements. Sadly, my wife has recently had to be placed in a secure ward, because of recurring violent behaviour. However, the consultant and his team are trying to assess her and adjust her medication and to reduce her aggression and agitation and we have been included in several ward team meetings. Unfortunately, it looks like the Coronavirus outbreak may significantly delay my wife's return home, because residential care and support staff have been seconded into other units in the hospital, to release staff for frontline intensive care duties.