Learning Disability & Autism and the inclusion of Social Care into Health

I attended the   Staying Healthy – Health & Wellbeing Conference 27 March 2023 and the presentations gave insight to many good works occurring, but, unfortunately, there was little mention of social care and social care and health have to be so interlinked that you can’t see the join and it is imperative that both survive intact for both to survive to any degree, where one fails the other will follow. So, I believe a lost opportunity was lost by NHS England. Both areas are extremely short of funding and many other resources, staffing so much so, and I believe social care even more so than health, which is not saying the shortages in health are not detrimental, but so much more so in social care. This includes all areas of social care including social workers and even more so care workers, not just care homes, but all areas for children and adults of which home care and supported living are just 2 but many others. Both areas are desperately short of funding, social care so much more than health. In both areas the blame is at the door of government, this one and all previous and as see any forthcoming governments. Social care has, as all Local Authority funded areas of which social care is one of many, have since 2010 been penalised by governments through austerity cuts. But in fact social care has never been really funded by any governments and this is so evident with this current government, for in the few instances where social care is mentioned the amount said to be given are so way short of what is really required. To make any real difference £12 billion is required, the promised £3 billion, see what The King’s fund says, but as I say so much more is required now, not next year for that could well be too late. Then sustained funding for all years to come. Without a sustainable and effective social care the NHS has no hope to survive so both social care and the NHS will fail all down to having no ‘listening’ government. In effect government does not care about the NHS and in reality can’t see any need for social care. The government is not only blinkered, it just does not care because it has no thoughts what soever for persons in need of social care. Similarly, to how they view persons on welfare benefits, but so much worse, when you wouldn’t have thought that possible. A caring and listening government is required by us all, but will we ever get one, I so hope so, but I can’t see one coming in the near future. Please see the agenda for the NHS England conference. Part of the problem was not including social care in the creation of the NHS in 1948, but then, as is now social care was not considered important, the big difference was that was due to ignorance, but today with so much information available, it is not really ignorance, but total government indifference. With Learning Disability (LD) and Autism there is so much information available and reported to the Department of Health and Social Care, (DHSC) one being the LeDeR programme since 2016, which is the reporting of the early deaths of persons with LD. As I said this is reported to the DHSC, but at the start of the COVID-19 vaccination programme although the evidence of persons with LD & Autism were susceptible to the effects of COVID they were not originally placed as a priority in the programme, just shows how this government views disability. Even now there is no alternative to the vaccination programme, so persons who are needle averse still can’t be vaccinated and effectively no blood tests be taken on which much medical diagnosis is a starting point of. While needle phobia is generally not readily known about there are signification numbers of persons affected and this incidence could well be larger in persons with LD and autism So much more needs to be done and the time to do it is getting forever shorter.

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Thousands with learning disabilities trapped in hospital, some for years | Learning disability | The Guardian

This is other situations which are adding to the crisis in social care and health, both are very under resourced areas and adding greatly to the concerns of persons in need of care, their families and the staff in those facilities.

In many instances the lack of appropriate facilities nearer to where the person in need of care lived also adds to these concerns for the further away they are from any family will only add to the distresses of the persons and their families.

The families could well be a great source of information on how to look after their relative, especially on how they have tended to live their lives and more about their individual characteristics. Hospitals, any hospital tends to treat conditions on a general basis and don’t usually alter this to individual tastes and some preferences. Everyone is an individual, but in many instances the routines of hospitals are unable to take these into account, especially when many resources are in short supply.

In many instances the persons in these assessment units will undergo changing moods and these could well become more intense the longer they are away from their families, thus leading to more difficulties in the administering of their care, thereby creating even more distress to them. This could well, then lead to measures being taken by the hospitals to contain the person, which may not be the best ways in dealing with the situations, but have been believed to be the best in general, but not for each individual person. So a person could become more distressed than they were when originally admitted and this, if the treatments being given are not adjusted lead to more severe deteriorations.

This is expressly so, if a person is deemed to be ready for discharge but there are no appropriately accommodations available, near their families, who could be then available to help in any care being required.

This is due to the very severe crisis in social care throughout social care which has been caused by many years of under investment in social care by UK governments, especially since the 2010 Tory austerity cuts on Local Authorities.

The social care crisis is so severe than it could well see the end of social care in the UK, which would have very serious consequences for health in the UK, and create even more crisis in the NHS.

Unfortunately this current government and all previous governments have ignored social care leading to this very severe crisis and there does not appear to be any real assistance coming in the future. Therefore the crisis in both social care and the NHS will continue to escalate, thus causing even more greater longer stays in hospitals assessment units.

Not good for anyone, so we urgently need a very listening government. Human rights are not being respected and many more safeguarding alerts will occur. So very urgent funding and other actions are required. The funding will need to be long-term to ensure continuity and sustainability for social care, which has never been present before.

A great culture change is required by Government.

 

 

Source: Thousands with learning disabilities trapped in hospital, some for years | Learning disability | The Guardian

‘Barbaric’: Hundreds with learning disabilities kept locked up for years | ITV News

We all know that this practice is totally wrong, but little is being done to right these wrongs, especially by this Government and many, if not all previous Governments.

Adam Downs is not a criminal nor suffers with mental health issues, well didn’t when originally incarcerated. He has learning disabilities and autism which are conditions and not diseases, so there are no medical treatments to be administered and no way the conditions will be minimised or go completely, by being in Rampton and similar institutions his condition will worsen, and will have already done so, considerably, for it is love and attention in a very caring environment and not an institution metering out punishments, being given totally unsuitable and irrevelent meditcations to subdue his behaviours, which are a means of communications from Adam that he is total upset and not being listened to and no way are his family.

He is there because the ststem is totally ‘unfit for purpose’ as over many years, even from 1948 and well before sufficient funding, if any at all have been provided by each and every Government. I mention 1948 as that was a large shift in creating or starting to create the ‘welfare State’ and the creation of the NHS, in which Social Care should have been included as a major element of health care and not been left aside with no real funding. Even in 1970 when Social Care was officially brought into the jurisdiction of Local Authorities, but again without the necessary required funding.

Health and Social Care are so interelated and one so much depends on the other, for without the required social care peoples health deteriorates causing more needed access to NHS care and when discharge is contemplated, there is a great shortage of suitable social care into whom the perfsons can be discharged to, csusing persons to be retained in hospitals, thereby blocking others to be admitted to the NHS hospital system. Thus, causing ambulances to not being able to transfer their patients into A&E so queues of ambulances are created outside A&Es, thereby reducing the capacity for ambulances to respond to other 999 callouts, creating much more distress not only for the ambulance crews, but the people awaiting for ambulances to come to their aid, which makes their conditions and ailments worse and eventually causing many unnecessay deaths, which are blamed on the ambulance service and the NHS hospitals, when the total blame rests with the Governments and especially the health and social care Ministers and the Prime Ministers.

The required funding needs to be found, for it is when there are Government ‘pet’ projects and social care has been waiting for far too long.

But, while a very major issue, Finance, funding is not the only cause in the demise of social care for again Governments Policies are also to blame, Immigration, social housing, welfare benefits, etc.

More people are desperately needed in social care, but people who are able to care and respect the chocices of the persons they are caring for, but this requires a much increased hourerly rate, better working conditions and rights of employment.

Also, please note that Social care is much more than the elderly in care homes, for it includes both adults and children in areas of home care, supported living, respite, hospices, etc.

Local Authorities, urgently need to be sufficiently funded and not be subjected to even more austerity cuts as the recovery for social care as to be seen to urgently, or there will be no social care, which will then means there is no NHS to speak of.

Source: ‘Barbaric’: Hundreds with learning disabilities kept locked up for years | ITV News

15 Scots with learning disabilities and autism in hospital for more than 20 years | The Scotsman

As well as being a Human Rights issue, it is a disgrace that persons with learning disabilities and autism are referred to these hospitals and are there for much of their lives. But, much of this is down to lack of sufficient planning and development of services, with funding being a major issue. Social care due to incompetent Government management both today and many, if not all over the past 40 years, is in a major crisis, but also housing as a role to play, which again is a funding and planning issue which has and is causing an extreme short supply of suitable housing.

There is also the public view of Social Care, which, very unfortunately does not have the degree of understanding and priority as does the NHS. But is just as important and needed as is the NHS and both are very closely related. As degrees of insufficiency in the NHS, housing and social care lead to more and increasing health issues for the NHS to deal with, thus creating capacity issues within the NHS..

Social housing has been allowed to decay, coupled with the inability to raise the housing stock. This brings health issues, which are not being sufficiently dealt with and therefore the cycle of deprivation continues.

So solve the very grave funding issues of social care, build more suitable housing and maintain existing stocks, which in turn will decrease the need and reliance on the NHS, which also needs to be suitably funded.

The ‘Duty of Care’ with the Government, the local Governments and the services concerned is causing much concern and much disregard for the individuals and families involved.

Years of Government incompetency’s, lack of forward planning and the required funding have all come together and this while causing the problems are also affecting the human rights of the individuals and families concerned.

These areas are as important as all others being defence of the UK, Policing, Local Authority services and the tory 10 and more years of austerity cuts to the local authorities are as much to blame as the other issues. The population of the UK as been seriously disregarding by successive Governments and this needs to change.

 

Source: 15 Scots with learning disabilities and autism in hospital for more than 20 years | The Scotsman

Mum’s anger as son held at Rampton Hospital alongside notorious criminals – because he is autistic – Nottinghamshire Live

This is a travesty, which is happening way too often.

This is due to many reasons:

Lack of support for social care, mostly financial, bit also staff resources
Lack of suitable social housing, mainly due to finance and insufficient knowledge and flexibility in the system
a system which is nowhere suitable
classing autism and learning disabilities incorrectly as a mental condition

It is a very large worry for every parent of a child with autism and learning disabilities and one which urgently needs addressing in all areas, including educating professionals who should already know, funding sufficiently all affected areas and many more.

 

Source: Mum’s anger as son held at Rampton Hospital alongside notorious criminals – because he is autistic – Nottinghamshire Live

COVID nasal sprays could offer advantages over traditional vaccines – a virologist explains how they work

I am aware that research of a COVID nasal spray are ongoing as are research into COVID tablets and COVID patches all of which would, if they are as effective as the vaccines would be of great benefit to combat COVID infections and transmissions. But I fear the same urgency, importance and finance are not being placed on these areas and too much reliance is being given to the current vaccines.

To have these other forms of COVID products would be beneficial in m any other ways for they would be much easier to transport and administer for they could well be administered with the interventions of medical personnel. This would be not only of great benefit to the so called, developed world, but even more so for the so called, undeveloped world, sometimes referred to as ‘3rd world ‘ countries.

How I so hate that terminology for we should be all equal, no matter where in the world we reside.

While I so wish these alternative forms of COVID treatments were here now, as |I have said for the many other parts of our world, but I have also personal reasons, for my own daughter is one such person with a needle phobia and so currently is unable to be COVID vaccinated, which is causing me so much great worries.

She is, currently, undergoing needle phobia therapies, but her phobia is so deep routed due to all the many operations she had to undergo from birth, which has left a deep rooted fear of not only needles. But also, what she feels the needle may lead to, the many medical procedures she undergone for many years from birth. This is coupled with her lack of degree of understanding, even though she is in her 50s, she has learning disabilities and autism which as caused a severe lack of understanding capacity to a large degree. Not only is she unable to give her consent, she has no understanding of what consent is. However, she is willing to take other forms of medication be it liquid or tablets as she as not experience negative effects of the forms of medication and has a great trust in those caring for her. To enforce anything upon her will break that trust meaning she will be even more vulnerable than she currently is.

So for many reasons this new research into nasal sprays, tablets and patches is of great importance and I so hope the expertise and degree of importance, urgency and finance is of equality to that of the original research into COVID vaccinations.

Source: COVID nasal sprays could offer advantages over traditional vaccines – a virologist explains how they work

‘Antiquated’ mental health laws in England and Wales set for overhaul | Health policy | The Guardian

This is news that has been required for some long time, however, it needs to be reinforced by a huge investment is corresponding social care services, which are exceedingly underfunded and have been for far too long. In fact, social care has never been sufficiently funded by any UK Government.

The moves in the 60s to increase community care and the closure of mental institutions were a good move, but sufficient funding did not materialise to ensure it was a full success.

‘The impetus to close asylums began in the 1960s. This may have resulted in reduced admissions but, in practice, few community services were developed and large-scale closures did not start until the 1980s, with the first closure in 1986. For hospitals that were completely closed, the process took around two years.

 

Case study 1: Deinstitutionalisation in UK mental health services

https://www.kingsfund.org.uk › making-change-possible’

 

Safeguarding and care have to be main priorities, as are choice, dignity and respect and in the current system not all are abided by with much determent to the persons in need of care.

 

So while the expected charge is good news,  it will, without the necessary funding be not as a successful as it should be.

 

Much is needed in social care, but without the funding it will not be achieved and the funding is required now, not in 3 or more years. Persons with learning disabilities and/or autism have a right to life and to lead their lives as they wish to, as we all have, but currently there are still many inequalities.  

 

 

Source: ‘Antiquated’ mental health laws in England and Wales set for overhaul | Health policy | The Guardian

right to life and to lead their lives as they wish, as we all have, but currently there are still many ill equalities

Lateral Flow Tests

I am a family carer for my 54 year old daughter who has severe learning disabilities and autism with many other health conditions.

I am 72 and my own health is far from good as I have arthritis and severe breathing difficulties, none of which is COVID related, but has got worse since having COVID, so I could now have Long COVID.

The medication I am on from my arthritis affects my immune system and I am therefore vulnerable to COVID and have been isolating ever since COVID. But have been admitted on 4 occasions to hospital during 2020/2021 due to my breathing problems. I have had 4 COVID vaccinations and waiting for my 5th in the next month or so.

Unfortunately my daughter has been unable to be vaccinated as she is needle averse and although she has been receiving needle averse therapy, so far this has not affected her inability to have needle injections. So, we are, patiently awaiting other means to have the COVID vaccines either, by nasal spray, patch or tablet. All of these are being research, but with no apparent urgency, a patch may not be available until 2025, no information on nasal sprays and tablets.

We have been able to obtain the free lateral Flow tests until recently, but now, whenever we try to request such tests are told there are none available. But many establishments are wishing for negative Lateral Flow Tests to have been obtained before attending some appointments.

The inability to obtain the Lateral Flow Test is not only worrying, but is limited our life to a major extent.

All COVID restrictions have now been removed, in England, even the mandatory wearing of face masks, although there is still guidance to do so.

This Government needs to be doing more for vulnerable and disabled people, but by their track record, it is extremely unlikely they will do so, it is as though we don’t exist, well certainly in the minds and actions of this Government.

This is showing a great lack of ‘Duty of Care’ by this Government, but do they care, I fear not.

It is my belief that this Government is doing all they can to eradicate England of vulnerable and disabled persons.

We are still part of the UK, but are discounted by this Government.

Free Lateral Flow Tests are being withdrawn from the end of this month and not sure if they will still be available for Vulnerable persons, let alone the N HS and Social Care. But, with the lack of tests to be issued, it would appear that they have already been withdrawn.

GOVERMENT, this is not good enough, you are supped to be there for all in England, let alone the UK, so be THERE and be SEEN to be THERE.

‘I couldn’t have shouted louder’: Family seeks answers after care system fails son | UK News | Sky News

Although  poor or bad care should never be ignored it is not always the fault of the carers, especially recently when all carers have been working over and beyond due to lack of staff, inappropriate systems, COVID experiences, insufficient management and a serious lack of funding. It is also well known that rates of pay for carers is abysmal, but that should have no bearing on the quality of care, but staff exhaustion could have.

This Government and no previous Governments have valued social care and as such, funding has never been a priority for any UK governments.

This in some respect is so for mental health for when in the 60s/70s it was envisaged that metal health should be transferred from the mainly, Victorian Institutions into the community little or no finance was provided and so appropriate housing was virtually non-existent and has led to the situations of today.

Similarly, the funding of social care on any extent of sufficiency, if any also did not take place and still hasn’t today.

It is a disgrace that persons with learning disabilities and autism have not been sufficiently looked after and this is mainly down to UK governments not providing any real finance for social care and mental health. For while neither learning disabilities and autism are mental health conditions the lack of suitable and sufficient facilities will have a great deal to do with the onset of mental health conditions. In fact, any government since 1948 and certainly within the last 20 years should be ashamed of themselves, for it appears the methodology used was ‘out of sight, out of mind. For they either didn’t wish to know or have the ability to know.

Also as well as insufficient finance and inappropriate systems there is also a great insufficiency around the knowledge of learning disabilities and autism for in most cases , if not all not one person with a learning disability and/or autism should never have been placed in mental health facilities, as appropriate community settings in every area should have been available. But as said before the lack of finance and governments unwillingness to provide any and no real insight to the problems by indifference to the conditions was the main cause.

It is not families letting down their relatives, for they have and are doing more than they could have deemed possible, to the point of making themselves ill by the lack of notice and actions they are receiving.

This is a complete dereliction of ‘Duty of Care’ by UK Governments.

 

Source: ‘I couldn’t have shouted louder’: Family seeks answers after care system fails son | UK News | Sky News

The failure of provision for neurodiverse children during the covid-19 pandemic | The BMJ

While COVID has expanded these deficiencies in the Educational system and Health, it is, in fact, underlined by years of insufficient activity and finance from this and all previous governments and one that should be showing the accountability of these government and not of any particular Party, as all have been guilty of these inactions and lack of sufficient finance.

In many instances could it be out of sight, out of mind, that is with the exception of the individual families concerned. but no one listens to families as they don’t speak with one voice, if they actually speak at all.

For what family is really going to take on any particular Government, the respective Secretary of States and Prime Ministers  and any of the Local Authority Educational departments and Health Authorities.

The families don’t have the required financial ability, the time and practical knowledge to do so. Also the inability to find like minded families, but then every, families needs and the needs of their respective children will be different.

Now with the aids of new technology the means to find other families may be more easily possible, but much is governed by Data Protection, and still the financial ability, sufficient allowable time and other resources will not be there. As for much of their lives will require the families, by the mothers and fathers, if they are still 2 parent families, as for some a parental split may have been caused due to the pressures related to caring for their children, which is very time consuming, the need to earn a living, which all create additional pressures which may be too great to deal with together, but much more difficult to deal with if separation of parents become an outcome.

For all of this occurs unseen by non-affected families, who may also have there unrelated difficulties.

It is not as though the problems will have been unseen by some professionals but could be out with their areas of operation, as unfortunately, especially in health but also areas of local authorities, the working in ‘silos’ as been the norm for far too long.

Working together should have always been the common aim and the sharing of information and even some resources for the betterment of others and to increase to knowledge of all concerned, should have been followed. However, even today Silo working is still the norm for some.

 

Source: The failure of provision for neurodiverse children during the covid-19 pandemic | The BMJ