A “gloriously ordinary life’’: Has anyone read this... - Mencap

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A “gloriously ordinary life’’

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Has anyone read this House of Lords publication?

publications.parliament.uk/...

Chapter One

publications.parliament.uk/...

and so on.

Chapter four is very interesting to the present climate of a claim to a continuous failed system of social care and sets the claim into a rather stark sense of a failed Care Act 2014.

Chapter five touches on the Strengths based approach which I have sensed for more than four decades when I first came across this modality of sociology in American academic institutions.

As a parent with a vested interest in the social care system in England because of my son's severe learning disability condition, I cannot say with a good conscience that social care in England is either fit for purpose nor transparent or honest.

I cannot lie and say that GP practice, hospital appointments or Social Services Adult Social Care departments have been either helpful or truthful in the way they have acted in the last 35 years of my son's life. In fact they have all lied through their teeth at times.

I suppose my hope is that this House of Lords publication may signal a more joined up and better referenced resource to accompany existing as well as new legislation.

The compromise will be trusting GP Practise and LA ASC LD departments whilst they prove that their rather remarkable ability to lie and misdirect and manipulate - will be set aside when they finally embrace the 'new' model of care as expressed in the House of Lords publication.

In the mean time - we are all pressed to exhaustion with real anxiety for our loved ones.

10 Replies
Steve__ profile image
Steve__

Thanks for the heads up and link. Yes, truth not always easy to obtain! Best wishes to you and your loved ones.

Tracidu profile image
Tracidu

All sounds positive ,.... I have cared for my Severe learning disabled son for 38 years , I also cared for my mum who had dementia for 5 years , my husband for 4 years before he passed away ,and all at the same time with very little or no help from SS . When I recieved my state pension my carers allowance stopped as it was classed as an overlapping benefit . I queried this with my MP , the reply from the house of commons was that carers allowance was a payment for people who had to give up work to support the person they cared for ? It was around £62 at the time?? I didnt understand how this could replace a wage and also it can only be paid for one person . Unpaid carers are never mentioned when it came to carers . Covid may have highlighted the situation a little .I dont know if this paper will make any difference to Social care but we can only hope . Thanks for posting the link .

Bluey203 profile image
Bluey203 in reply to Tracidu

That seems so unfair that you lose carers allowance once you receive the state pension. So unpaid retirement age carers then receive the same as others who have no 24/7 full time caring responsibilities, totally ludicrous, the carers allowance is a pittance in comparison to how much money you have saved the state over the years.

Tracidu profile image
Tracidu in reply to Bluey203

Exactly , Friends of mine with no careing responsibilities recieve the same state pension , I have no other income , cares is very low for what we do but it woukd help a lot if it was paid to pensioners who care for familt members , just my opinion. Thanks for your reply

in reply to Tracidu

One can only admire your resilience to have been such a dedicated informal carer for so long and in the diverse and intimate manner you have described.

Genuinely remarkable and humbling.

I presume that you could sense my meaning were I to express that same level of empathetic intelligence from a different perspective and say that I am inspired?

That is the difficulty of the House of Lords publication I posted.

Recently a social worker said to myself that my 'lived experience' was inspirational.

She believed that saying so would give me an empathetic signal that she understood. Given that I had recanted 63 years of 'lived' abuse by the state, I had hoped to prevent her from going down the cult dial that is always evident in religious cults - for the same reason it is evident in many social workers by and large. I was somewhat discouraged by her ideological charm and for six weeks resisted every element of her undoubted attempt to remove my son from his true condition whilst simultaneously upholding a neutral and meaningless equivalence.

She lost the argument and my son won the day, because his condition is real and hers is a worthless flannel.

I must say that you have been through the mill.

Like yourself the Covid crisis nearly broke me and my wife. Unlike yourself we took the direct payment route and started employing carers 10 years ago to prepare for this present insanity that we call a national conscience. It is very challenging for sure, but I can see how your present daycare issue is a deep concern for yourself having tried the personal assistant employment route in the past yourself.

I was minded to ask you which LA are you in? So I will!

Tracidu profile image
Tracidu in reply to

Essex County Council . We do not have a named SW , my son was banked years ago so only see them when a financial assessment is due . Careing has become harder since I lost my husband but I will carry on as long as I can , just reading your Link I was reminded that unpaid carers have been forgotten especially pensionable carers so I thought I would add my response to it , hope it wasnt too wow is me ,as I dont want to come across like that . I care deeply for all LD people and thier carers .

in reply to Tracidu

I agree that we need to support one another as much as we can do. I also see how easily we can come across as ‘wow is me’ when we have something to say that counts for others. What better way to express oneself than to count for others? One cannot overlook the importance of experience and your present 69 years of experience counts.

My mother in law had an undiagnosed moderate learning disability. I thought for decades that she was just a little eccentric - until my wife and I took her into our home when her husband died. I remember saying to her soon after that we would care for her until she passed. Her look of gratitude nearly flawed me on the spot. It was so striking and genuine that I suddenly realised who she was. She lived a further ten years and nearly drove us all mad with her child like mind but her need never left her and she was a wonderful woman.

No one in her entire adult life ever spoke of her learning disability. Not even her children. She was so invisible - until she was seen - then I began to document her condition. And yet her siblings and her husband and her children and grand children in her locality knew her intimately and simply accepted her for who she was. It was a lesson in understanding the precept in the expression, A ‘gloriously ordinary life’.

That’s not remotely sentimental when set against the cost to both her and her husband and her children in their unsupported lives living with learning disability.

Bluey203 profile image
Bluey203

It is a very comprehensive report, and really hits the nail on the head, its recommendations for improvements to Adult social care are spot on, if the government acted upon every point made, life would be so much better for everyone relying on the services. Some particularly interesting points were :

167.Adult social care and the budgets of local authorities for its delivery have been chronically under-funded for many years—both a cause and a consequence of the lack of attention paid to the sector. For example, while the total budget for publicly funded adult social care in 2022/23 is £17.1 billion, the commissioning budget for the NHS for the same year is £153 billion. This is despite the fact that the adult social care workforce is larger than that of the NHS.

To address this the report is recommending the government should establish a 'Commissioner for Care and Support' .

9.The Government should establish in the next 12 months a Commissioner for Care and Support to act as a champion for older adults and disabled people and unpaid carers, and to accelerate a more accessible adult social care system. The Government should ensure this role is filled by, or shared in equal measure, with a person who has lived experience.

Apparently Scotland has already put in place a National Care Service in 2022 which should be up and running by 2026. This will ensure care services are of the same standard throughout Scotland, with a national long term plan for the social cares future. England has no such plans.

443.We must make things better as a matter of urgency. Part of that is putting a new value on those who care, unpaid and usually unheard. But unpaid carers must also be able to count on a service that helps rather than hinders them—a service that cares about them as well as about disabled adults and older people, which is respectful, clear and compassionate in the way it supports and values their skills and experience in the provision of care. Given the debt which we owe unpaid carers, it is both ethical as well as pragmatic to provide them with greater options and support. They are the foundation of the majority of care provided and as such are the scaffolding around the NHS and its future prospects. As we argue in this report, the invisibility, poverty and isolation of unpaid carers must be relieved, navigation systems must be transformed, essential short breaks must be provided and better support must be put in place to enable unpaid carers to keep working in paid employment if that is their choice.

Thank you Parental for showing this report, I just hope the powers that be fully read and fully digest it. We need the likes of Mencap and the Alzheimer's uk to put the pressure on the government, they are our voice.

in reply to Bluey203

O I say! To do! To do! 

Those practiced charms incumbent set,

In hidden veils their forebears knew,

To such a scale of learning pressed.

In daughters now pretentious vanity.

Their charms now set to other ends.

To pass our children through the fire.

Thus with our hands consent.

in reply to Bluey203

I don't want representation in a system that is built on class.

Appendix 2 lists the witnesses and both Mencap and Alzheimer's Society are included.

A recent s37 Continuity of Care pursuant to the Care Act 2014, implemented by ourselves for our son finally gave myself and my wife the means to document just how appalling this system really is. It is not only structurally sick - it is driven by individualism from the directorate to the frontline worker - where one would assume representation would be advantageous.

It makes not a shred of difference to even a competent and signal presentation carried out in the full gaze of the CoP and the OPG where the only real advantage is to turn inward and make the family the source of all care.

The statutory authorities in health and social care pervert a true respect for family life - especially parental involvement at every level of their involvement and especially where the law is implemented and applied in a straight forward way - so that the effect is to drive parents into obscurity and make them by reason of sheer burden of their learning disabled children - the author and finisher of their children's lives - whilst the executives of all these pressure groups are mostly silent other than in the confidence they take in social theories.

The less learned the more vulgar the application. The more learned the more class driven it becomes.

The report is in essence highlighting that reality and doing so from the House of Lords.

How British.

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