Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities | Coronavirus | The Guardian


Yet again persons with learning disabilities, (LD), are, apparently, going unnoticed by the UK Authorities. This is in spite of a report in November 2020 from Public Health England,  which showed that people with learning disabilities were three to six times more likely to die from covid-19 than the general population during the pandemic’s first wave

This is when, before COVID-19, the risk of persons with LD dying earlier than persons without LD is well known and the reason the LeDeR programme with the University of Bristol, is being researched, which started on 1 July 2016 and is funded by NHS England.

So, why with all the above are persons with LD being ignored and even worse, if they went into hospital could well have a DNR (Do not resuscitate), placed on their record.

It would appear all is against persons with LD, but why?

Do these authorities feel the right to life of persons with LD should be ignored, if this is correct, then this is a very dangerous and very worrying premise, for to believe, this is how exterminations start, just look at Germany in the 1930/40s.

This needs to be stopped forthwith for persons with LD have as much right to life as anyone.

 

 

Source: Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities | Coronavirus | The Guardian

Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities | Coronavirus | The Guardian


Yet again persons with learning disabilities, (LD), are, apparently, going unnoticed by the UK Authorities, especially in Wales. This is in spite of a report in November 2020 from Public Health England,  which showed that people with learning disabilities were three to six times more likely to die from covid-19 than the general population during the pandemic’s first wave

This is when, before COVID-19, the risk of persons with LD dying earlier than persons without LD is well known and the reason the LeDeR programme with the University of Bristol, is being researched, which started on 1 July 2016 and is funded by NHS England.

So, why with all the above are persons with LD being ignored and even worse, if they went into hospital could well have a DNR (Do not resuscitate), placed on their record.

It would appear all is against persons with LD, but why?

Do these authorities feel the right to life of persons with LD should be ignored, if this is correct, then this is a very dangerous and very worrying premise, for to believe, this is how exterminations start, just look at Germany in the 1930/40s.

This needs to be stopped forthwith for persons with LD have as much right to life as anyone

Source: Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities | Coronavirus | The Guardian

Carers Voice ‘Working Together’ : LD Carers Butty Group — WordPress.com


For the last 18 months 3 Family Carers of relatives with Learning Disabilities and/or Autism (Chris Sterry, Judith Gwynn and Kate Chapman) have been working together with a PHd student (Rachael A Black) at the University of Sheffield (Department of Human Communication Sciences) using the framework of Co-production. This was initially to provide research for Rachael’s thesis required for her PHd, but also to have a meaningful outcome for LD Carers within Sheffield, UK

At the start of this co-production Rachael enquired through Sheffield Mencap & Gateway for carers of persons with Learning Disabilities to work with her on her PHd project.

During the last 18 months we have had regular meetings at the University of Sheffield on how we would proceed with this project and what our initial outcomes would be. Initially through general discussions, which Rachael was recording, it became clear that the recurring situations was around carers communications with the range of Service Providers. Within the context of Service Providers it included Sheffield Adult Social Care

 

Source: Carers Voice ‘Working Together’ :  LD Carers Butty Group — WordPress.com

The Future of the Sheffield Learning Disability Partnership Board and the Sheffield Learning Disability Service Improvement Forum


I am Chris Sterry a family carer and one of the Carer reps on both Learning Disability Partnership Board (LDPB) and Learning Disability Service Improvement Forum (LDSIF).
Some of you may know me and some not, as some will be aware of LDPB and may be LDSIF.
The reason for this communication is that there has been for some months comments or discussions on the continuation of the LDPB both in its current form, some revision of its form or to even abolish the concept of LDPB altogether.
A meeting for the Reps of LDPB and LDSIF has been arranged on 4 October 2017 at St Mary’s Church in Sheffield, UK.
 Before I continue with this, please see below some information of the inclusion within LDPB and LDSIF.
Within the term LD this does include and/or Autism, although there are discussions on going in forming a separate Autism Partnership Board.
LDPB currently meets every two months, it is a Public meeting and therefore anyone can attend. It was formed under ‘Valuing People‘, which was ‘A vision for the 21st Century’, a White Paper presented in March 2001 and in Chapter Nine it laid down the provision of Partnership working by Partnership Boards which were to be established by October 2001.
There are a number of reps who are down to attend and these come to represent the following
Sheffield City Council
Sheffield Health and Social Care NHS Foundation Trust
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield Clinical Commissioning Group
Sheffield Healthwatch
LD Service Providers
Persons with LD
Carers of persons with LD
Sheffield Carers Centre
This Board used to meet every month, but approximately 2 years ago a recommendation, by Sheffield City Council, was put before the Board that the monthly meetings become 2 monthly and in the other months SIFS would be created, so in effect month by month there would either be a SIF or PB meeting. While there was no real objection to SIFs being formed there was to make the LDPB to 2 monthly from 1 monthly and it was the majority view of the LDPB members at that meeting to continue to meet monthly. Remember this was a partnership and all partners should be equal, but 1 partner, namely, Sheffield City Council (SCC) decided against the majority decision, so much for the partnership principle and democracy.
The various SIFs were created and for the LDSIF as well as the reps from SCC, reps from persons with LD and Carers of persons with LD could apply to be reps and if agreed by SCC then they could attend. This was not fully within the partnership principle and the meetings would not be Public meetings, so only the reps could attend or others as invited. The SIFs have not been created by Statute as was LDPB and is purely a decision by SCC.
Now SIFs are supposed to deal with operational issues while LDPB to deal with strategic issues.
There are a number of SIFs, in addition to LDSIF and these include
Carers, where I am also a Carers Rep
Adult
Mental Health
and possibly a couple more.
As I stated above regarding the discussions on the future of LDPB and in effect LDSIF a joint meeting has been arranged for the reps of both LDPB and LDSIF to attend and a copy of the invite is attached. For information this joint meeting is on Wednesday 4th October 2017 at St Mary’s Church from 11am to 2pm.
I will be attending as well as other carer reps and I do wish to know the views of others within Sheffield, whether they be LD Carers or not, but especially LD Carers and others within the LD community, be they persons with LD, LD Service Providers or any other connection with LD.
I have scanned the internet for information regarding Sheffield LD Partnership Board and although there appeared to be links they did not connect with any relevent information except for this from 2007 and this Help for People with Learning Disabilities. The first link is now 10 years old and the person who appears as the originator for the Foreword, Josie Bennett, who is no longer with Sheffield City Council and there goes another tale which I may proceed to mention some other time. Looking at the second link this appears to be more promising until you progress on the link and the get the message ‘Sheffield has a Learning Disabilities Partnership Board to help us make sure that we meet the needs of people with a learning disability in Sheffield. The Partnership Board meets every two months and is attended by family carer representatives, people with a learning disability, and representatives from agencies in the city who work with people with a learning disability.’ if you then follow that link you get Search Results (0). Now I would say that is not a very encouraging sign for the future of LDPB within Sheffield.
Please do advise your comments, do you agree with me or have your conclusions. LD Boards in other areas do appear to be active being Derbyshire, Nottinghamshire, Lincolnshire,York and current minutes are readily available, while for Sheffield no current information appears to be readily available.
I also facilitate a LD Carers Support Group at Sheffield Carers centre for which there is an email address being ldcarersbuttygroup@gmail.com, please could you direct replies, comments, etc to that email or to the FLASH (Families Lobbying and Advising Sheffield), of which I am also a member, email being flashld575@gmail.com.
I do look forward to hearing from, as do my fellow reps, especially in these times of change, uncertainty and austerity, not on just the uncertainty regarding LDPB and LDSIF, but any aspect of relating to care. I repeat the 2 emails where comments are encouraged to be made being flashld575@gmail.comor ldcarersbuttygroup@gmail.com or you could come to the LD Support group which is held every 4th Tuesday of each month at the Carers Centre from 12 noon to 2pm, please bring a Butty (Sandwich) drinks tea, coffee, water are providing.
The website of the support group is ldcarersbuttygroup
Thank you
Chris Sterry

Read More »

“We had never thought about disability seriously until Oliver was born”


It is great when we all hear stories such as these, especially in the current climate of many areas of negativity.

In general the Learning Disability community may not be a vast as some other forms of disability, although there are vast numbers of persons with LD with its many related conditions and each person may be different in many ways, but the numbers of related condition and their effects are may be more vast than other disability areas.

LD is an unknown for many within the UK and its press and Government perception is not generally good, thus progressing the negativity relating to LD to the public at large. But this negativity is certainly very misplaced and this negativity needs to be urgently reversed.

While the LD community is very progressive more collective activity needs to be generated and not only between the large national charities, as there are many local independent small and relatively large charities and a vast arrange of support groups, which in the very austere financial climate are not receiving sufficient funding and in many vases no funding at all.

Now is the time for all to come together and in doing so all other related medically based charities to provide wherever possible a joint solid front to the authorities especially on a local level and with these local authorities to central government, which will eventually achieve more for us all and enhance the lives of our loved ones.

Scope's Blog

Chris is taking part in RideLondon for Scope next weekend. When his son, Oliver, was born with an undiagnosed condition, Chris didn’t know who to turn to for support.

We had never thought about disability seriously until Oliver was born. Oliver has an undiagnosed genetic condition which has certain physical manifestations. He was born with fused fingers and he has a cleft palate. He has some other conditions and a severe learning disability but it’s quite hard to describe. If your child has Cerebral Palsy or something that has a name, then you know where to go because there are people who will support you for that.

Oliver, a young child wearing glasses, smiles

We’ve also found out that Oliver is very strongly on the autistic spectrum as well. This came as quite a surprise to us because he has a very good sense of humour. He is very naughty but not in a bad way. He…

View original post 614 more words

New report sets out why dementia and learning disabilities needs better representation in policy, practice and research | Care Industry News


People with learning disabilities are five times more likely than those in the general population to develop dementia*.

Source: New report sets out why dementia and learning disabilities needs better representation in policy, practice and research | Care Industry News