MY WONDERFUL DAY

Elizabeth would like to share some positive thoughts today on Easter Monday and here is her consent in case anyone from the Team is reading: “yes pl to positive messages!

“Hello mum I really enjoyed seeing you tod let’s keep in contact because you are my friend I love you with all my heart. I’m having a Chinese fillet steak mixed veg spring rolls chicken sweetcorn soup.” “I will be extra vigilant with paperwork.” Apparently Elizabeth mentioned about some forms which were presented to her from a social worker attached to the hospital – something to do with care? Apparently according to Elizabeth the former area tried to carry out some kind of assessment? – most probably the Care Act Assessment they failed to provide for many years from the minute Elizabeth acquired the independent council flat.

Anyway, we have had a lovely day and the weather has been very mixed but at least the sunshine came out.

Elizabeth was concerned her phone was not working so we got this sorted out, then the broken glasses, then on to Costa Coffee and to a very nice wine bar that did nice food, then shopping in Sainsburys, then a short walk along the river so Elizabeth could admire the birds and ducks and the day went quickly.

I am hoping to take Elizabeth to this wonderful place where there are miniature horses and you can stay overnight. I will take her to have a look first of all and maybe it will be possible to pop in to the care farm which again is on the way.

There are so many wonderful places to see that I would like to take Elizabeth to, especially Lincoln to the Cathedral where Elizabeth wrote the following prayer. Now since last year when treated like a restricted prisoner, things are getting better but Elizabeth is quite right when she says she is being very vigilant as regards paperwork and I would applaud that especially with all the dubious things that have been going on over the past months.

I have since written to the Leader of the Council and I am now going to respond to the letter from the CEO of the Trust and I am waiting to hear more about the provisions which ENFIELD COMMUNITY REHAB TEAM should provide in terms of adaptions which is far more important than the questions below. It is a bit late now for a Care Act Assessment that considers these points after all these years and much of the questions do not apply so this shows how dated and ridiculous the current system is. It would appear this is all about tick boxing and there is no way that tick boxing is in any way appropriate in this case where there has been severe neglect and not by family.

1. Managing and Maintaining Nutrition   
2. Carrying out Personal Care                      
3. Managing Toilet                                                        
4. Being able to make use of the home and other environment
5. Relationships with Family/Friend            
6. Accessing and Engaging in Work, training Education ETC not possible due to substantial decline
7. Being part of the Community including making use of facilities
8. Carrying out tasks of being a parent       

I wish to share the following which is applicable to all vulnerable people treated like prisoners for years on end in secure hospitals because they have autism or learning disabilities:

Dissociation and hostility are not indicators of psychosis in this contact but a sign of perfectly understandable anger and fear of a foreshortened future.  This is common in people incarcerated and robbed of the last vestige of dignity and hope.  

How very true!

Wouldn’t anyone experience ‘dissociation and hostility’ if someone locked you up, spied on your every move, intruded in family visits and neglected proper care and medical treatment.

“She has on a number of occasions, been so distressed that she has had to have rapid tranquilisation administered. She has also had to be placed in seclusion. It must be stressed these measures are to ensure her safety. Trust policy is adhered to, and the measures have only been undertaken after less restrictive options have been exhausted.  

As said by the independent chair of the CTR “The whole thing stinks” and in respect of the above comments I would add “RUBBISH!”

There seems to total lack of insight at LPFT and LCC plus ENFIELD CC and BEHMHTNHS.

I shall be revealing the full extent of this lack of insight within this blog as well as power abuse by Council and Trust. I look forward to sharing anyone else’s shocking experiences too as I naively thought and hoped by moving that we would be treated better but now there is double trouble with two areas to deal with.

I wonder what the forms were all about – Elizabeth said she was not feeling well at the time and wisely refused to sign and in any case it is important that an advocate be present when it comes to something as important as a Care Act Assessment or care provisions. I immediately contacted Voiceability when I heard from Elizabeth about this.

The other – capacity assessments. Oh my God! There needs to be a complete overhaul of policy as regards this. No capacity assessments should ever be conducted by members of staff who are involved in care surely this is totally wrong. It should all be independent as this is conflict of interest. I will be writing about flawed capacity assessments next time and the abuse of power by Councils and Trusts.

There needs to be Open Dialogue not secret MDT meetings including 29 without family present. A Care Act Assessment needs to be done fairly but nothing has ever been done fairly by the former area. Best Interest assessors should be abolished as they do not have a clue what is in best interest and if they are not medically trained they should not be carrying out anything of the sort just so as to decide what THEY dictate is in best interest when it is obvious to us all in the family that Elizabeth has full capacity – full capacity to say:

“Go away” and “it’s nice weather today” or “no comment”. I’m afraid you have failed in this respect LPFT and I will advise more indepth about these assessments and the disturbing way they try and manipulate the process and abuse power.