Many if not all or most systems are not fit for purpose as many Sub Postmasters can confirm with the Post Office/Fujitsu scandal and now a previous Post Office system Capture.
However, while the above are but 2 examples with the former including more than 900 Sub Postmasters, but, those are not my personal experience.
While mine didn’t include imprisonment the experience was horrendous and in total includes thousands if not millions, but in effect,t there aren’t specific numbers.
For this incorporates social care and while mine was adult social care there could well be equal numbers within children’s social care.
I wasn’t in need of adult social care but the adult disabled daughter of my wife was.
My involvement started in 1984 when I joined my wife to be family. A single parent with 2 daughters and a son. By my meeting my wife-to-be in 1984 the son was leaving the family home to start his own family. So my experience is just about my to-be-wife and her 2 daughters with from 1984 myself.
I have a short about 4 minutes video that has been produced within a university project which will include a number of unpaid family carers. My video has been completed and is available, while the other videos are being finalised.
The other videos with other family carers will be ready for viewing later this year when the project will be finalised and the research will be available in various research source areas.
I have been given authorisation to provide viewings of my video which can be viewed below. As it includes mentioning deaths there is a warning at the start of the video.
Please view as you wish.
As I state it starts with my life in 1984 when I met my wife-to-be at which time I wasn’t aware of her family until I decided to join her.
I was in my early mid-thirties and my proposed wife was slightly older than myself. I joined her family having no experience of any knowledge of disabilities or any dealings with public authorities.
Due to this I initially accompanied my prospective wife and just observed, not making comments within the various meetings.
I was gaining knowledge and didn’t wish to cause any problems with my lack of knowledge and could well comment and make difficult areas worse. It soon became obvious that nothing could make it worse for the system did that itself. After some months my prospective wife was not able to attend the next meeting so I attended alone to meet the various professional officials attending from health and social care. They were surprised I was alone and it was obvious that they believed I wouldn’t cause any difficulties as they previously hadn’t heard from me except my initial introductions. They believed my input would be minimal so at the start I spoke to each official in turn commenting on what I believed their roles were and to some extent what I had I observed from the previous meetings. They soon found out I wasn’t the patsy they believed I was.
I took on the system and in future meetings both my proposed wife and myself worked as a team, we had some differences in approach but we both wanted similar outcomes. My disabled daughter was just about to commence what is termed transitionns from children’s social care to adult social care. It was clear this in itself was a difficult process due the 2 systems and found out later by communicating with other family carers that difficulty was far from it for it was more than difficult at times seeming impossible to create any reasonable outcomes.
I was finding out that with our disabled daughter’s conditions, she wasn’t just classed as being disabled her classification was complex needs due to her multiple physical, severe learning and a sensory disabilities. Much later in our daughter’s life when I learned about autism I knew she was also autistic but initially didn’t proceed with a formal diagnosis as I felt I didn’t wish her to have another label.
It was clear from the start that if you didn’t challenge then more than likely you didn’t get most of what was required. I originally believed that systems were there to help, but it soon became clear that the systems were there to hinder and you couldn’t fully believe what you were advised and never fully advised. For if you weren’t aware what could be available you were hardly ever advised what was. A Catch 22, being you had to ask for what you weren’t aware was there to be asked for.
It appeared that there were physical disability services and also learning disability services and physical were reluctant to take our daughter due to her learning disabilities and learning disabilities due to her physical disabilities. This was for day services provision as at school which was a special needs school not mainstream was a 5 days provision but not so for any adult day service provision which could be from 1 day or any to 5.
A supposed 1-year assessment process progressed to 2 years due to the problems that occurred due to the inability of both learning and physical disability day provisions to accommodate our daughter. It was eventually solved by my daughter going to a day service for the elderly reluctantly by the assessment process, although the elderly day service facility had no problem to accommodate our daughter and neither did she or ourselves. the problem was the assessment process due the age gap between my daughter and the elderly attending the day service, which was no problem for my daughter had no awareness regarding age and if the day service and people attending had no objections then there was no problem and there never was. In fact, it was the best day service provision she ever attended, which can’t be said for any others she attended.
When the elderly day service closed, supposedly on a temporary basis for a roof repair, but never reopened she was transferred to other day services. Even tough being told the elederly day service would reopen I assumed would never be be the case, even though reassurances were given it would reopen.
But now having gained some knowledge of the system and how it should work but never does, it came as no surprise to me.
Up until my daughter’s death I was ever present to ensure that my daughter obtained what she needed for her to live a reasonable life, but it was never easy on either myself or my wife for it was forever a fight and in most instances a fight of wills. I never gave in to the authorities and challenged them on ever occasion when needed. Any of the services granted could have at any time be partly or fully withdrawn due to my actions, but never did, unlike I know it did with other families. Perhaps I knew the system better than others and in some instances much better than those who were supposedly administering the system.
Even though no longer an active carer I am still involved in many areas and my local authority do come to me to engage my involvement to change or create new services for they know I am prepared to speak out and those in some degree of authority don’t scare me, never did when my daughter was around and certainly not now. My sole objective is to endeavour to make services better for those in need of services, which is what the systems should be, which is person-centred but the services and the authorities are institution-centred which is completely wrong. The lack of sufficient finance would be one major reason, but in many instances it may not be fully as it is administering the system in how it should be even if fully financed.
As said finance is a major factor, but not always, but lack of suitable and relevant communication will be with all parties and in many instances within the same department. This is even so when I found out from the person I was speaking to that they were sitting next to the person who would be administering the next part, but communication was virtually non-existent, that was ridiculous but it could be present more often than not.
The other major reason is people administering the system or their part of the system in having no knowledge of how their part comes to them and its importance, and where it goes to next and its importance and the importance of their part. Everyone should have some knowledge of the full system and the importance of every part. But the working is in what I call ‘silos‘.
That is part of the LA system which is generally as it is in all LAs but there may be some differences, but hardly any that could benefit the person at the centr, the person in need of care of the service. This person is the whole reason the system is there but they are often treated as a non-entity and many times as the problem which they are never are and should never be treated as so for the problem will always be the system, lack of finance and knowledge.
In my dealings with my LA and certain Officers who were stating information that I know is wrong or not fully correct, but in their belief, they are always correct so will not be willing to accept challenges. In those instances, I have at times left it as it is rather than leave with aggression, but in many instances just referred up to the next line of management, in which there are many in LAs, and don’t accept until I get the agreement I wanted.
In at least one instance where I had raised a formal complaint that had been in process for some months and when I then met the senior manager, who had been instructed to investigate the complaint and explain the problems it was sorted in seconds with a comment, if it had been referred directly to them at the outset then much time would have been saved and the resulting costs involved.
When I have complained it was hardly ever about individuals but the system, which most people agree is far from fit for purpose.
My employment background was in many respects in finance and some areas of management and dealing with systems, so in some respects I could have had some advantage in my dealings. I also am aware there are many ways to put forward the same requests, how to word and communicate and be prepared to challenge. I could have come unstuck many times for my daughter, but didn’t, perhaps I was lucky and in this my daughter’s life was better. More was really required, but you do need to know when to accept or not and that could well be different on every occasion.
Authorities have to listen more and understand better and this is even more so with regards to the government, but then the government appears too not to want to listen and much more so not understand.
But then that is government any government.