Have come back from a Punk Psychologist's blog. Yeah, it was the punk bit that really got me. :>)
The posting there was about homeopathy and a theory that it could actually be used effectively or that (with a fair amount of tweaking) be more effective. Well, I think that was the crutch of the issue. Not being academic, I can't always see the X's from the Y's.
The posting was also about, which is more in line with my thinking, 'research' that is bandied about as bona fide and is often based on pre set agendas rather than a more objective look at what the outcomes are.
I liked one of the responses, with the quote, 'even bad evidence constitutes as evidence'. I guess so because then there is an opportunity (should people accept the mission) that others who are more objective will look at the evidence and carry out research of their own. Well, as another theory it sounds plausable.
I thought about the evidence in regards to what has been going on this last year and half with Dad/MH Services and now Social Services and why I am now at the point where I can no longer provide him the support (playing Devil's advocate) that he needs.
Driven by despair on Friday, I rang my care co-ordinator, having a mini rant. Her advice was to get Dad an advocate. She gave me a number (for an advocacy referral service) which I rang and was advised that if Dad was happy to have an advocate they would seek the most appropriate service (either older age advocacy or Rethink Mental Health). The last time I tried to get an advocacy service for myself from Rethink (many moons ago), was when I was in acute care. I got an answerphone message saying I would be contacted within a few days and I never heard from them again. So am a bit concerned that we are already on a quest for a non service. still, one has to try.
Dad, now realising that I am burnt out, has agreed to have an advocate. Later in the day, he discussed this with his support worker who told him the advocacy service was "Useless". Interesting that, interesting because there seems a lack of insight into the mechanics and output of the organisation she works for whilst happily passing on messages of incompetence about another organisation.
Whilst on the subject of 'MH staff input', Dad also told me that the support worker is bringing round a letter for him to sign, in which it says he is happy with the care he is getting????? He said he thought that MH services were trying to drive a wedge between us (him and me).
If that is the case it beggars belief but there needs to be objectivity in any 'worthy' evidence base....So objectively, either Dad is telling porkies and I don't think it would be in his best interest to make up things like that or MH staff are 'concerned' about something (something like covering their own arses).
For sure, if Dad is happy with his care then he should sign it but considering he is ringing me every time something is wrong (which is happening on a frequent basis) I don't think that is the case. For his part he keeps saying nothing will make him better. I don't think it is my remit to try and work that through or provide appropriate care in that regard... I believe it is the remit of MH Services (along with other teams)to provide treatment and care that helps. I don't believe that they can make him better (all singing/dancing)....but I believe a more multi-disciplinary (as in team) approach to his care would make things more comfortable for him and actually I think signing that piece of paper will give MH Services the power to do little and without being questioned.
It is all the accumulative things (that aren't so little that add up to a big mess that has to keep being sorted...with me pushing and pushing)...that has led me to where I am ...Constantly mind fekked and migraines coming thick and fast.
Ex: Dad has agreed to have ECT. I have said "Your choice Dad" but am concerned about how he is going to get to ECT and back. I am not able to take responsibility for him in that regard. I don't mind (when able) going to GP visits with him but being responsible for his care after he has had ECT is not okay. I am no medical expert. He reckons that it will involve him using a taxi!!!
Do people taxi back from having ECT treatments? Is that medically/ethically acceptable for someone old and living on their own? Should it not be the responsibility of MH services to provide support for him, after he has had that treatment or get care support in place?
That is just one issue in regards to his on-going care needs. And that is why he needs (we need) an advocate because in the absence of agreements for MH/Care support (as and when) Dad turns to me and I am not and cannot be responsible for the level of care he needs.
I am wishing(rather than having any faith) that the advocacy support is good because I can see this all going even more tits up again. Another case of experience over hope!!!
NB: Apologies for repetition and rambling but needs must
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Mandy,
ReplyDeleteHope the advocacy helps your Dad get the support he needs and takes a lot the pressure that's mounted up and worn you down over the last 16 months off of you.
Good quality advocacy can help a lot when service users find themselves being ignored or on the receiving end of endless mindless NHS bureaucracy rather than getting an appropriate service and I hope that your Dad gets a great advocate and service.
But good advocacy is often not available at a local level , advocacy provision is very patchy in terms of availability and quality.
My experience with MH advocacy from an organisation called ,POHWR has been , to be frank, pretty fecking appalling.
I had to chase from the get go. I eventually managed to track down the advocate he was a laid back middle class type who sounded as if she was on more medication than I was. The advocate said she needed to access my complaints file , I had already signed POHWR's consent form and not anticipating any problems she told me she would contact me again the following week.
Then I waited.
And waited.
when I didnt hear back from the advocate as stated I contacted POHWR to ask what was happening and got a message from my very laid back and distant advocate informing me she had experienced difficulties accessing complaint documentation from my Trust.
That brought me into direct conflict with my Trust's complaints department again but for once it turned out that they were not at fault and hadnt created any difficulties for the POHWR advocate at all, the complaints officer had just explained to her that he needed the nod from me and they could mail or send the documents she requested out to her without delay.
The advocate informed the complaints officer that his e-mailing them out to her - i.e. the quickest way of getting them to her - was problematic and she would phone back later that day after she had spoken to her manager.
The officer awaited her call but she didnt phone back. Not that week, nor the next or the next but when I chased up she made the excuse of experiencing unspecified difficulty from him when this was an outright lie.
When I asked the advocate why she had made up the story about experiencing difficulties she argued that she thought time was not important and that my Trust was responsible for contacting me which, under normal circumstances might have been the case but here she had specifically told the complaints officer helpfully dealing with her enquiry that she would talk to her manager and would get back to him but didnt.
He remarked to me that he thought that very strange at the time.
I pointed this out and the advocate changed tack and said she'd tried to phone but hadnt got through.
This was more bulshit. The advocate had simply dropped the ball and walked away because she was professionally incompetent.
According to POWHR's website they are in the business of empowering people but I fail to see how patients and carers are empowered by advocates who lie to them to cover their own professional inadequacies.
I was very annoyed about the advocates unprofessional conduct and her excuses for it and said so in writing and asked her to register my concerns about her actions as a formal complaint.
This did not happen.
If service users and carers are forced to rely on advocacy and the Government is funding it then advocacy has to be available, of professional quality and above all else reliable.
POHWR isnt delivering this type of service at the moment but it IS being funded to.
My son Colm had a very committed and able advocate. Although I didn't require her services, I was impressed by her zeal and knowledge. She also followed up on Colm by phoning to check that I had got what I needed from social services. I later found out that she had an excellent reputation.
ReplyDeleteI hope that your dad has a similar experience.
Btw, a couple of hours after ECT treatment, most people are well enough to go on with their lives as if nothing unusual had happened.
HI CPC
ReplyDeleteHmmmm...I can't say am overly optimistic about the advocacy service but it is the only option for Dad to get independant support. Well, the only one I know of.
I turned to POHWR ICAS when my blood test results went walkabouts. The advocate was very nice but I knew more about things than they did and their remit was to do with how procedures were followed rather than quality of the service provided. I was also advised not to ring them as they were hardly available but to use email instead...that turned out to be a problem because they often forgot to respond to emails and for me I knew the score in regards to their level of professionalism when I had to write to them (a couple of days before the resolution meeting) saying I thought that we should meet either prior to or after the resolution meeting to discuss things.
Perhaps they were relatively new to the job but I did wonder what level of training they had received prior to becoming an advocate. It was all pretty amateurish.
Still, trying a different advocacy service this time and hoping the support is more relevant to my Dad.
I read concerns on the PPILog about an advocacy service. Perhaps there should be something independant that looks at the levels of advocacy service provided in the UK. For now, one of my main priorities is getting advocacy in place for Dad.
Hi Robert
ReplyDeleteGood to read that quality advocates do exist (and helped Colm and you) and it isn't just an urban myth. :>)
There's hope for Dad and me yet.
Dad has had ECT before. Many moons ago when he was in acute care. I was much more anti then (although am not particularly pro it now) It didn't actually appear to do him any harm...it didn't appear to do him much good either and he had the safety net of being in a hospital unit (of sorts should there have been problems).
I don't believe in taking unnecessary risks (viz a vie transport)..and I don't think services should either.
He might be absolutely fine after the treatments but he might not. That is why I think an ambulance transport service should be provided. Maybe I am being too picky but I don't think so.
Hello Angelflippers.
ReplyDeleteThe essentials of advocacy are total independence and helping the person to speak for themselves or speaking for them base entirely on their wishes - NOT WHAT SOMEONE THINKS IS IN THEIR "BEST INTERESTS."
The United Kingdom Advocacy Network (UKAN)is the best source for information. Go to
http://www.u-kan.co.uk
Since April 1st the new Mental Health Act brought in a statutory right to have an advocate and PCTs have had to set up specialist services to provide this. Rethink has the contract here and their principles are:
* independence - advocates must be free from any influence by providers of health or social care and from any conflicts of interest
* empowerment - our ultimate goal is to enable those using our services to develop towards self-advocacy. An advocate must always support them in speaking for themselves but, where this is not possible, he or she must represent their views as if they were the advocate’s own
* impartiality - advocates must be impartial and non-judgmental. They are separate from an individual’s assessment, treatment and monitoring and, as advocates, must listen to and hear that individual’s report as their truth and therefore valid
* confidentiality - all discussions between anyone using the service and an advocate must be in the strictest confidence
* inclusion - the service must recognise diversity and ensure no one is excluded because of a difference in language, culture, disability or capacity
* free access - advocacy is a free service and must not discriminate on grounds of poverty or wealth.
Beware though - have a look at my recent entry about Age Concern on PPlog.
Hugs and hopes that things continue to improve.
Best of Everything.
Mike.