Working with Jane

We are currently recruiting a team for Jane. Jane is caring, family orientated, kind and generous young woman with learning disabilities and epilepsy.  At times she can challenge those people supporting her.

All posts involve evening and weekend work as well as sleep overs.
This position has “A genuine Occupational Requirement” covered under the Sex Discrimination Act 1975 and therefore only applications from females are required.

If you are interested in the below post please contact us on 01752 546 449 or e-mail jo@beyondlimits-uk.org for an application pack or an informal conversation.

Note:  A DBS Check will be requested in the event of the individual being offered a position with Beyond Limits, the cost of which will be to the employee, however, this will be returned after completion of probation period (6 months)

Ref:  Relief14
Closing Date: 11th April 2014



Relief Support Workers


Relief Workers £7.50 per hour


Post involves evening and weekend work as well as sleep overs.

If you are interested in the above posts please contact us on Tel. 01752 546 449 or e-mail jo@beyondlimits-uk.org for an application pack or an informal conversation.

Note:  A DBS Check will be requested in the event of the individual being offered a position with Beyond Limits, the cost of which will be to the employee, however, this will be returned after completion of probation period (6 months)

  Job Ref: MAR/APRIL14JS  

Temporary Night Support Workers for Mikes team

We are also currently recruiting a team for Mike.  Mike is a 40 year old man who has autism and epilepsy and will be moving into his own home in Plympton.  Mike is a caring man who is clever, very funny, loves a laugh and a joke and has a great imagination.

Mike's team would need to be confident but calm and gentle, consistent in approach with flexibility and a sense of humour. An ability to fix things e.g. a computer would be useful!

Knowledge of autism and epilepsy would be preferable.
  



Temporary Night Support Workers - To provide night time support at unsociable hours
circa £7.50 per hour


All posts involve evening and weekend.

If you are interested in the above posts please contact us on Tel. 01752 546 449 or e-mail jo@beyondlimits-uk.org for an application pack or an informal conversation.

Closing date: 11th April 2014 at midday

Note:  A DBS Check will be requested in the event of the individual being offered a position with Beyond Limits, the cost of which will be to the employee, however, this will be returned after completion of probation period (6 months)

  Job Ref: MAR/JS  

Application forms and job specs




If you find that you are unable to download the application form from our website then please give us a call on the above number.

Download: Application-Form-2011.doc

Download: Team-Leader-Job-Description-2011.doc


For more information on Relief Support Worker posts, please
    Jo Sly (Office/HR Manager) on 01752 546 449 or 

    e-mail to jo@beyondlimits-uk.org for an application form.
All posts involve evening and weekend work as well as sleep overs.

Note: A DBS Check will be requested in the event of the individual being offered a position with Beyond Limits, the cost of which will be to the employee, however, this will be returned after completion of the probation period (6 months)

Relief Support Workers

We have vacancies for Relief Support Workers

Circa £7.50 per hour

All posts involve evening and weekend work as well as sleep overs.

If you are interested please contact us on:
For an application form, simply download and fill out this form.

Note:  A DBS Check will be requested in the event of a person being offered a position with Beyond Limits

  Job Ref: Relief2014 

My Experience with Beyond Limits

My Experience With Beyond Limits
Thoughts expressed by one of our Team Leaders

Seeing the advert for Beyond Limits enlightened me, ticked all the boxes for what I believe should be available for anyone with learning disabilities accessing a care provider.

Reading the website I was just hoping that it just wasn't words as it really pleased me in what I'd read.

Application, all knowledge based about you as person, who are you, what you like? Great for people matching. Previous experience was what you have on paper and whether you have training, never about you as an individual.

Beyond Limits was a really person centred approach to recruitment.

Within my role as a Team Leader, I feel that I am listened too, valued and appreciated.
Bonuses provided for going above and beyond!!! Even a pamper day or flowers :] for all!

One area that really pleased me is that the Individual’s home really is their home. No office, no obvious signs that the individual is supported.

The individual chooses their team and I have never seen any support workers being moved to another individual on the start of their shift. It really is 'Hands off It’s my Home and My Team'

This was an area I have found very challenging for both the individual and support in previous work places. I have previously been in situations where support have been moved more than twice at the start of a shift.

Also everyone has their own home, they do not house share! As we know this encourages behaviours that challenge. Living alone gives the person the option to explore the own individuality, preferences and choice.

I also believe strongly that people deserve to re-join their community after years of being away in hospitals/institutions and moving them away was an injustice to them.

Times can be hard and challenging and that is why as a team we have to be strong and tight together but after a year of working with a lovely lady the progression has been amazing.

There is also the option to develop and grow with the company. If you are particularly keen in a particular area Sam will invest in you to become a trainer. I am just about to embark on recording and reporting training and my team member is now the medication trainer.

I am really happy to be a part of Beyond Limits and want to continue until I retire!!! (MANY YEARS AWAY)

Mandy



In Control July 2013 presentation


WELCOME TO OUR NEW SERVICE LEADERS!!

We are very excited to warmly welcome our two new Service Leaders to Beyond Limits.

  We would like to introduce you to
 Menna Bingham and Michelle Tucker.

We look forward to working alongside 
Menna and Michelle.



 Menna Bingham





Michelle Tucker

NEWS

As the Individual Health Budget Project Beyond Limits is part of in Plymouth enters its second year, I have started to meet and work with some families who have different views from those we met in year one. These families don’t want their relative to move out of the Specialist Hospital setting they are in despite them being hundreds of miles from home.

This is not to say that these families are not just as passionate about their relatives, nor do they love them any less, and they still only want what they feel is best for them. These families have just been so profoundly affected by the lack of support, failed services and rejection by the systems that were meant to protect and help them and their relative in the past that all trust, hope and optimism for the future has disappeared and they are very scared of any change. It has been truly humbling to listen to the heartache and mental stress these families and their relatives have been through trying to make things work when they lived more locally, and for them to still take part in planning for the future.

I took two of these family members in my car on the 750 mile round-trip to do a service design meeting for their relative. These trips are very useful (about the only thing about someone living so far from home) for getting to know people and listening to their story as 14 hours in a car makes or breaks relationships!

They were grateful for the lift as their usual journey four times a year takes 24 hours round-trip on a bus. They have been making the trip for over 8 years now and have had to make it into a mini-break as it is too far to do in a day (paying for travel and accommodation themselves). They don’t want things to change  and would rather make these trips than bear the consequences of another placement in the community for their relative.

One of the family members summed up how they felt about their relative being in a Specialist Hospital, and wanting them to remain there as; ‘he is not hurting, he is not hurting anyone else and no one is hurting him’. I found this statement very profound but could not blame them for wanting so little for their son after hearing the catalogue of disasters, poor support, and heartbreaking decisions they had been forced to make, including sending him away, when he lived nearer home and things went wrong. They are also both retired and could not imagine how they would cope with the worry and involvement they used to have to give, as they were always called to help out, when things went wrong. And they can’t imagine, nor have any faith in, it not going wrong again.

All this makes me both angry and sad on two counts, not with the family but with the systems that I have been a part of in the past,  which enables this situation to ever exist.

Firstly, we do families a great disservice when discharge planning is not started on the day that their relative is admitted into Hospital. This enables families to gradually fall into a false sense of security that their relative may be able to remain in the Hospital environment long term. No one would blame them for this hope, when for perhaps the first time in years they are able to breathe a sigh of relief that they don’t have to worry for a while and can get a semblance of life back, but then weeks become months and soon the years roll by and their relative is still in Hospital

Secondly, if a person is admitted for assessment and treatment surely the Hospital should be made (through commissioners) to give detailed plans of what is to be ‘assessed’ and ‘treated’ and a timescale for release? Treatment is surely a short-term thing so I wonder what is still being ‘treated’ after 8 years. Should they not then be held accountable if the treatment is not successful in the timescale? These are questions I have yet to get a good answer to. Interestingly the Specialist Hospitals that have engaged most proactively with us on this project have been those where the person has been there for less than a year as they are keen for the person to move on.

The expense of someone living away from their community is immense in all senses of the word; emotionally, treatment costs, costs of visiting and professional visits and reviews plus the costs of transition back home which should not be underestimated. When are we going to learn to spend time getting it right first time, and not giving up on people in their local communities?

A new report from The Centre for Welfare Reform

The Centre for Welfare Reform for welfare reform has produced a report that reflects the determination and commitment of the CCG to develop a system of support for people with experience of a learning disability that is citizen orientated and strengths focused.

This is a brave thing we are doing. There is some uncomfortable reading here, as well as some triumphant stories, and we acknowledge that this is only the start of the change that we need to deliver for local people.

When reading this report we ask that ask that you suspend the temptation to say its wrong or to interpret it as individually criticising you or your part of the system.

CfWR Returning Home

Sam Sly's Learning Disability Today Column March 2014

Learning Disability Today Column March 2014
A beautiful, vibrant, loving, caring young woman is celebrating her 30th birthday soon. To give you an example of her thoughtfulness, on Christmas Day morning this young woman took time out to phone me and wish me a Merry Christmas and to tell me I’d been missed as I had been away from work for a few months. She is a true gem.
She has said I can share her party plans with you all. She has been making them for months and sent invites out in September because she is so excited about it, and has never celebrated a ‘big’ birthday before in her own home. She’s done detailed planning and some sharp negotiations around the costs to ensure it is affordable. This woman knows how to strike a deal!
Fourteen people have been invited – family, friends and some people that help her day to day. They are starting off at her house with hair and make-up, a few drinks, music, laughter and some girly fun. Then a limo is taking everyone to a slap up Chinese meal in town followed by karaoke and a VIP area at a local club to end the evening with some dancing. What a night! What a way to celebrate and I am glad I will be there with her to see her smile.
The thing is, she is worth it, she has been through some very tough times, she is brave and resilient and at long last she is living a life - still with all its ups and downs - that makes her happy the majority of the time, as life does for most of us. That’s real life!
This young woman has some major health problems, she hates them, but she puts up with having to spend lots of her precious time in a general Hospital and at medical appointments. She has epilepsy you see, and coupled with a learning disability and an unjust label of challenging behaviour this young woman had to spend her 16th, 18th, and 21st birthdays in Institutions, including Specialist Hospitals away from home.
Just before Christmas I was off work after an operation and found myself spending more time on Twitter. I came across a story with similarities to our party girl but a very different ending. Although ‘story’ does not give justice to the travesty that happened to this very young man lovingly nicknamed by his family LB - ‘Laughing Boy’ - whose Mum writes witty, blogs about, and whose obvious love for him shines through every word.
LB also had epilepsy, a learning disability and was given a label of challenging behaviour. He was sent to a Specialist Hospital away from home where he died in July last year at about the time our young woman started planning her birthday.
His family, obviously devastated became more so when it emerged a few months later that the Hospital he was in did not, when inspected by the Care Quality Commission, meet any of the Essential Standards of Quality and Safety required.
Of the investigation, responsibility, culpability etc. I do not, nor profess to have any knowledge about. But what affects me most, and makes me saddest is that both our party woman and LB were turned by professionals, whose job supposedly involves caring for and about people, from the people described by those who love and care about them as; ‘hilarious, remarkable, generous, loving, talented and exceptional dude who loves Eddie Stobart, drum and base and going to London’ (LB) and: ‘loving, funny, witty, caring, sociable, gentle, beautiful, and resilient’ (party girl) into medical and behavioural non-humans. Their gifts and skills were ignored and from that point bad things happened.
It doesn't have to be this way. When we at Beyond Limits first meet someone we are planning with to move out of a Specialist Hospital we have what we call a Service Design day. It is a positive day, all about the person and their hopes, dreams, skills, gifts and talents and the person invites those people that love, care and want the best for them along. These days are incredibly powerful and they enable us to design a service for someone that has foundations firmly cemented in the good things, and in the positives, not the deficits.
I categorically believe that this is the only way to plan and get things right for someone. It is only on these foundations that any lasting service can be developed for people who have been so systematically de-valued and de-personalised by what we have done to them in our horrid systems.   

This column is dedicated to our Party Girl - hope you have an amazing birthday - and to LB ‘Laughing Boy’ and his family and their fight for justice. Good luck and the World are behind you. 

--------------------------------------------------------------------------------------------------------------------------------


LDT column Nov 2013

The National Care Standards Commission (NCSC), the Commission for Social Care Inspection (CSCI), and the Care Quality Commission (CQC) the changing face of the regulators that govern health and social care. Having been inspected recently, and worked for the NCSC and CSCI for six years from the inception of NCSC in 2002 I watch the changes, wince at the failures and where possible try to defend some of their actions because when the NCSC started it was full of hope and there was some good, ground breaking work.
I have been frustrated lately by the comments of the new CQC Chief Inspector of Adult Social Care Andrea Sutcliffe who has started talking of ‘a fresh start’ for CQC. I sometimes wonder whether CQC really believe that reinventing themselves makes people forget all that has gone before. I just see the wasted public money being ploughed once again into another transformation to the ‘same old same old’.
That aside the thing that frustrates me the most though is that much of what Sutcliffe talks about  as a ‘fresh start’ was happening and developing nicely when the regulator was the NCSC and CSCI for example experts by experience and yearly inspections. However, the dedicated central User and Public Involvement team that were doing amazing work with interested Inspectors around the Country was disbanded.
Another innovation that was designed to give regulators professionalism and would have given the public confidence and regulation consistency was the Regulation of Care Services Award (RCSA).
The RCSA was going to be the NCSC standard qualification for all Inspectors. All Inspectors were going to have to do the diploma/post degree level qualification on joining the Organisation.
Regulation isn’t taught on social and health care courses as standard, so other than ‘on the job’ training each Inspector is left to ‘interpret’ the job, standards and regulations becoming more confident with experience. Inconsistency of inspection and rating between Inspectors was one of the things that worried Providers, and to be truthful Inspectors.
The RCSA was an excellent distance learning course provided by Anglia Ruskin University, and I snatched at the chance to do it being one of the forty so Inspectors in the first year nationally to complete the two year course and achieve the qualification. I was also fortunate enough to then be able to do the offered Masters in the regulation of health and social care. By this stage I felt much more confident in a professional regulator and was able to contribute to the development of the Organisation as well. 
The RSCA was then axed. It was decided that the course or concept was not necessary and only two intake years ever happened – I believe less than a hundred Inspectors ever completed the course. I think this was a huge mistake.
Other things that the NCSC were doing, and thought worked well were also axed as the way we regulated was turned on its head time and time again.
·         We had a caseload of Providers that we kept year on year so that the residents/people supported got to know us, and us them. This was especially useful for people with learning disabilities whose communication was complex or who took time to trust people.
·         We Inspected at least yearly, often much more and our pictures and contact info was left in the home
·         We sent out questionnaires and contacted families, professionals and staff before inspecting so we had a good knowledge of what was happening before we visited
·         We inspected Providers of services that matched our professional and past experience – for me that was services for people with learning disabilities and mental health needs. We were therefore more confident and could keep up to date with current practice in our field
·         For the short time that we were the NCSC we had the ability to support providers with information, sign-posting and put them in touch with other providers to support one another instead of the current regulatory approach of ‘you are not good enough go away and sort it out yourself’.
·         We had offices and did not do remote working as they do now. This meant that we met each other regularly, we could share intelligence, discuss and map concerns, learn from one another
I am not saying everything was a bed of roses in fact I questioned the place of regulation on a daily basis. I left in the end because I became disillusioned about the lack of ‘teeth’ the regulator had to stamp out poor practice.
I suppose at the end of the day the big question is not do we need another ‘fresh start’ for CQC? But do we need this type of regulator? Is it making a difference and do we feel assured that our loved ones are getting the best quality of care and support they require? With the imminent launch of the National Association of Quality Checkers (NAQC) – the newly affiliated national body for self-advocate learning disabled led quality checker Organisations I know where, given the choice, I would spend the money I currently do on regulation. I would pay these people that have the experience, empathy, skills and hands on experience of the systems we have created every time. Good luck NAQC you are the future.  _________________________________________________________________________

Love
These last few months found me reflecting on Love. Yes, I know it has been Spring-time and I have attended my daughter’s wedding which may have coloured my views but it is more than that! I am currently updating for re-launch in the late autumn ‘Hands Off It’s My Home’ the quality improvement tool kit I developed to help providers striving to make services that help people have real lives, in line with Simon Duffy’s Keys to Citizenship. It was time for a refresh partly because Simon is also updating Keys to Citizenship and the element that we join in agreeing was not made prominent enough in his work and mine before this was love!
Why when love in all its guises is such an important, if not the most important part of our lives do we not prioritise supporting it to flourish in the lives of people with learning disabilities? Seems crazy doesn’t it? But maybe relationships and especially the parts around sexuality and sex are just a bit too difficult and uncomfortable to get to grips with?
Love has many layers, all as important as the next. C. S. Lewis (The Four Loves, 1960) talks about two different kinds of love ‘need-love’ that of a child for a parent, and ‘gift-love’ the love we give to one another through humanity. Love is important to everyone and most people’s hopes and dreams (people with and without disabilities) are to find and develop love through family, friends, relationships, sex and children. It is only through giving and receiving love and kindness, and feeling the range of emotions (both highs and lows) that people become alive. Love as a citizen is also about being responsible for others and respecting people’s differences.
All types of love need developing and nurturing, and a person with learning disabilities will have often not learned how to do this, because of isolation, segregation, discrimination and congregation. People’s relationships are a reflection of how they think about themselves. People we support may have been badly treated, discriminated against and may not seek positive relationships because they do not respect or trust others. They need support to feel good about themselves and develop and nurture loving relationships.
Lewis talks of four loves, which may be a useful way of support providers thinking about how they can help the person they support develop and nurture love.
Affection – the love for those who are ‘family’ or who get together through chance. This is a love without coercion, love that descends discrimination and is without condition. It may be described as natural love, and love born out of familiarity however, the vulnerability of affection is that it appears to be ready-made and it therefore expected and is extremely hurtful and destructive if it is not there. 
Friendship – the love that is developed as a strong bond due to common interests, activities, histories, traits and characteristics. Friendships are freely-chosen and can be life-long or last as long as an activity or interest does. People may have a wide circle of acquaintances but much fewer true friendships. Choosing friends and going on to form lasting relationships may need support as if people have not had chances to in the past they cannot always differentiate between kind honest people and people who may take advantage of them.  
Romance – the strong sense and feelings that come with ‘being in love’ through attraction, desire and longing for a connection of body and mind. This love is very powerful and can sometimes grow out of friendship but not always and people sometimes get confused about this especially if they have had little experience of friendships. Most people want to experience sexual relationships which may lead to commitment and a family or may not. Having sexual experiences, lasting or not and of the person’s preference, and being seen as loveable and desirable by others is very important to people.
Gift-love – love for others through their connection as people with humanity and giving without expectation of love in return. This is the love that binds communities together and those who give love in this way are often viewed highly by others.
So I would like you to reflect and consider in whatever job you do with people with learning disabilities, or whoever’s life you touch in what you do; can you put your hand on your heart and say you strive to increase the love in someone’s life on a daily basis? Do you ensure people understand relationships, develop new ones, nurture important ones, explore sex and their sexuality and have opportunities to give and receive love?
I know I don’t but I am going to go forward now and make a greater effort to, as it seems crazy that I didn't see before how important love is to having a great life.

_________________________________________________________________________________





Sam Sly's LDT Column March/April 2013 

The final DH response to Winterbourne View (2012) states: ‘All current placements will be reviewed by 1 June 2013, and everyone inappropriately in hospital will move to community-based support as quickly as possible and no later than 1 June 2014’. Fantastic, and was just what organisations like Beyond Limits were hoping for as a great start for 2013. However, from my experience so far on moving people from hospital two of the phrases used in this statement give me concern that these dates will not be hit, people will not be discharged and even if they are people will just move on to live in some other form of mini-institution.

The phrases are ‘inappropriately in hospital’ and ‘community-based support’. I believe that the first phrase may be used to prevent people being discharged due to the key decision-makers who have these powers making decisions based on limiting information about a person due to hospital environments that don’t always look at the whole person. This also provides problems for Providers once discharged because information given does not always give the whole story. The second phrase may lead to people being discharged to yet more mini-institutions instead of real homes of their own because of misinterpretation of community-based support.

Radical social work presentation

A presentation by Sam Sly to students at Plymouth University on the subject of Radical Social Work.


Sam Sly's Learning Disability Today Column February 2013

Another year over and what a year it was. Austerity is starting to bite, but to what extent is still unclear, all we know is that things are not going to get better soon. The future is looking bleak for many of the most vulnerable people in society with Dr Simon Duffy quoting at the Housing Support Alliance conference 2% of the population taking 25% of the cuts. These are the very same people we support.

It is in these times that we all need to pull together, form partnerships and pool our resources, wealth of experience, capacity and energy for the fight ahead. Cuts cause rifts and distrust making the chasm widen between those that have and have not as everyone fights for themselves instead of together. It is only through alliances that we can remain strong and keep doing the best for people.

Sam Sly's Learning Disability Today Column December/January 2013

As the Individual Health Budget Project Beyond Limits is part of in Plymouth enters its second year, I have started to meet and work with some families who have different views from those we met in year one. These families don’t want their relative to move out of the Specialist Hospital setting they are in despite them being hundreds of miles from home.

This is not to say that these families are not just as passionate about their relatives, nor do they love them any less, and they still only want what they feel is best for them. These families have just been so profoundly affected by the lack of support, failed services and rejection by the systems that were meant to protect and help them and their relative in the past that all trust, hope and optimism for the future has disappeared and they are very scared of any change. It has been truly humbling to listen to the heartache and mental stress these families and their relatives have been through trying to make things work when they lived more locally, and for them to still take part in planning for the future.

Challenging Behaviour presentation

A presentation by Sam Sly from Beyond Limits to the Challenging Behavior Foundation Board.


Sam Sly's Learning Disability Today Column September/October 2013

I have been lucky enough to be involved over the past four years in the creation of a dynamic user-led quality checking service ‘Citizen Checkers’ hosted by Cornwall People First that has now been up and running for a year in Plymouth and is making great strides in improving the services they check.

Citizen Checkers started in my head as a seed of an idea back in 2008 when I was part of the Change Team in Cornwall post the Cornwall Partnership Trust scandal. The Change Team were fortunate at the time to employ the expertise of ‘Quality Checkers’ from Newcastle an established user-led checking service which based its work around the REACH standards ensuring that supported living services were focused on the people they supported and reached good standards.

OUR NEW ADMINISTRATOR!




With her Apprenticeship successfully completed, we now welcome Alex Tilley as our new full time Administrator. Alex is a great asset to Beyond Limits and will always welcome you with a friendly and helpful smile. Well done Alex!

NDTi Leeds conference 2012.06.28

Sam Sly, Director of Beyond Limits is speaking at an NTDi conference on Thursday 28th June. During Sam's presentation she will refer to the two documents listed below.

Below are links to Easy Read tools developed by Sam Sly to use with people with learning disabilities. They are designed to help make decisions about housing options.

They are also useful for staff training when looking at change management and the rights and freedoms that come with a person with support being able to live in their own home.

The documents below are free to download and use.


 Download: Registered-Care-Home.pdf

 Download: Living-in-your-own-home-with-support.pdf

Beyond Limits: Sam Sly's July/August article for LDT


Beyond Limits: Sam Sly's July/August article for LDT:The piece below was written by Sam Sly from Beyond Limits for Learning Disability Today magazine to be published in July/Aug 2012 L..

Independent thinking
Getting people with learning disabilities and challenging behaviour out of the specialist treatment system and back into the community can be difficult, says Sam Sly
My most frequent saying of the past year has been: “If you have a learning disability and challenging behaviour you have more chance of winning the lottery than getting out of a specialist treatment hospital.” This has been prompted by my increased frustration at the complexity and bureaucracy of the systems in place, the power of professionals and the lack of expertise of those charged with helping people to move out of hospitals back to their communities and families.
Now that Beyond Limits’ project has reached the stage of discharging people from hospitals, the systems have exasperated me enough to change that saying to: If you have a learning disability and challenging behaviour it is easier to get out of prison than to get out of a specialist treatment hospital.” These are the reasons:
In the prison system a person has committed a crime, gone through a structured judicial process with the right to appeal, been given a sentence, done their time (often less than they were sentenced for) and been released – end of story. Not a good experience I am sure and plenty of people we work with have been through this system, but there is an end to it and the person returns to their community.
In the specialist treatment system a person doesn’t have to commit a crime to be locked up and have their freedoms taken away, it is the opinions of other people – usually powerful professionals – that dictate whether their ‘behaviour’ is unsafe, unmanageable, or anti-social. They don’t even have to be sectioned under the Mental Health Act. I’ve met a person recently who has been in hospital as a ‘voluntary’ patient for more than seven years because of the systems in place.
There is a judicial and appeal process if the person is detained, but for people who find it hard to speak up for themselves and with families living hundreds of miles away appealing is a complicated business.
The person then does their ‘time’. This may not be how therapy, treatment or rehabilitation is seen by professionals for whom it is a ‘programme’ but for those people I have met on programmes they don’t want to be there, feel incarcerated and want to know when they are leaving.
The treatment programmes I have observed are often complicated, with many hoops to jump through or levels of social acceptability to climb to get basic things like time on their own, money to spend or a walk in the high-fenced garden. People sometimes don’t understand the rules – and that includes staff – goals shift and release dates stretch on and on.
Not achieving goals for those people – or ‘freedom fighters’ as would better describe those who challenge the system – have led to longer ‘sentences’ and higher levels of tariff, restraint and incarceration. For some people non-compliance has led to transfer to even more secure hospitals sometimes further away from home.
I’m not saying that treatment programmes are not effective when short, targeted and time-limited. The sadness is we work with people whose stays have far exceeded the positive outcomes that could have been achieved and instead whose time in hospital is now significantly harming their chances of a good life in the community.
In the specialist treatment system people rarely get given a firm discharge or release date at the beginning of their programme. When I’ve asked professionals to give timescales the answer is usually that it is difficult to say, it is down to the individual and that they don’t like to say in case it takes longer and this upsets the person. My experience is not knowing when you are being released upsets the person more.
The release date is also further complicated and made harder to achieve by an additional influx of professionals (care coordinator, advocates, psychiatrists from the community, housing staff, social workers, provider agencies) all involved in the discharge plans.
One of the biggest barriers to release we have found is that it is understandably hard for professionals charged with taking back responsibility for a ‘risky’ person in the community to see that a person can be supported safely with less restrictions when support is flexible and responsive, the person is doing what they like doing and is supported by people that genuinely care. Agreement to discharge is made harder by hospital reports stating a person is unmanageable even in a hospital environment without 2:1 staffing or more, the use of physical restraint and PRN, and locks to keep them safe.
However, throughout all the frustrations and barriers the thing that keeps us going is the lives the people we support are living once they move back into their communities. One woman has just moved into a permanent flat and has been busy painting and furnishing it with the biggest smile on her face I have ever seen!



Beyond Limits: Sam Sly's March/April article for LDT: The piece below was written by Sam Sly from Beyond Limits for Learning Disability Today magazine to be published in May/June 2012 L...

Learning Disability Today Column May/June
This month, I pause to reflect on the work of Jim Mansell (CBE), sadly no longer with us whose work inspired us at Beyond Limits and the Health Commissioners at NHS Plymouth to take accountability for stopping the commissioning of placements for people with Learning Disabilities out of area and to work together as commissioners and providers to improve services locally.
I was fortunate to meet Mansell in 2009 in Plymouth when he was rolling out his revised report ‘Services for people with learning disabilities and challenging behaviour or mental health needs’ and he said to me that it would be the last report he would write on the subject as he was tired of repeating himself and not seeing anything change. He believed there was only one real solution and that was to stop commissioning places that took people away from their families and communities and instead invest money locally.  
Commissioning is without doubt the driver for good quality support, especially for people with more complex needs. The recent learning disability scandals in Cornwall and Bristol would have been prevented by good planning, insightful joint commissioning and robust quality monitoring especially if Commissioners had involved families and people using the places.
Mansell (2007) believed the answers to good quality commissioning for people who challenge services lies in:
·       Individualised, local solutions providing good quality of life not those too large to provide individualised support, too far from their homes, and providing good quality of life in the home and as part of the local community.
·       Direct payments and individual budgets always to be considered and to be more widely available.
·       Closer co-ordination between the commissioners paying for services, the managers providing services and the professional specialist advising on the support people need to ensure advice is both practicable and acted on.
·       Commissioners should allocate a budget to be used to fund a much wider variety of interventions as an alternative to placement in a special unit.
To give further weight to changing Commissioning being the only solution findings from a DH funded NDTi project ‘Incentives for Achieving Change in Private Sector Learning Disability Hospitals’ (2011) stated that despite the offer of free development support to achieve change few Private Hospital providers wished to embark on a reduction of Hospital beds and alternative service models. Change was made even more difficult by Private Hospitals having a large number of Commissioners from across the Country purchasing beds meaning they found it difficult to work together to change practice and with no national steer or direction the problem was compounded. The major obstacle the NDTi found was Provider’s primary obligation to achieve financial returns to their shareholders and demonstrate financial viability to their debt funders (banks etc.) who in times of economical difficulties need demonstration of short term profitability rather than taking a longer-term financial view. So in summary we cannot look to Private Hospitals to change.
This month, the end of the first year of our project with NHS Plymouth, sees us in a series of workshops run by Dr Simon Duffy starting to think with our partners in Health and Social Care about Commissioning for continuity of support to enable the people we are working with to have a life that makes sense to them in the long-term without having to jump through unnecessary hoops when they, inevitably, move across from Continuing Health Care to Social Care funding as their health needs diminish. This may not be an easy transition when Health and Social Care currently work very differently, the project is set up to support people very flexibly and people’s Individual Health Budgets will have to transfer into Social Care Frameworks that have been set up for a market not so used to flexibility. We will have to consider how to work together to make sure people remain in the community long term in a system that sees funding currently yo-yoing back and forth from Social Services to Health if people’s behaviours that challenge deteriorate. One wonders about a system where there is no incentive (other than moral of course) for Social Services to maintain high cost support packages when if they fail the outcome is a transfer back to full Health funding in a Hospital placement.
On a different subject I’d like to leave you with a few questions that are mystifying me recently. We are told the ‘Long Stay Hospitals’ are all closed now and therefore people no longer have to live in Institutions for long periods of their lives. So why then in 2012 have I met people with Learning Disabilities who are still spending from 3-14 years of their lives in Specialist Learning Disability Hospitals? Is ‘Recovery’ ‘Treatment’ and ‘Therapy’ not supposed to be a short-term intervention? And at what point does short-term become Long Stay? Have we really moved very far from the days of Long Stay Hospitals for some people?

Director of Beyond Limits ran a workshop at the NDTi Conference held In London on Service Designs, Working Policies and Individual Health Budgets in March 2012

Sam Sly ran a workshop on Service Designs,Working Policies and Individual Health Budgets and the outcomes of the NHS Plymouth/Beyond Limits  Project so far.  Please click on the below link Nd ti presentation-2012-sam-sly where you can run through the presentation that Sam used.

Speakers included: Bill Mumford, Chairman, Voluntary Organisations Disability Group.

Can we confidently say that Supported Living is being delivered effectively? After the scandal at Winterbourne View, can this approach be applied to people with high and complex support needs? With support from the Department of Health, NDTi has been running the Housing and Social Inclusion project for two years working with seven Local Authorities working to change and improve their housing and support services for people with learning disabilities. This project has generated significant learning and a range of resources on many of the key issues.


Please click below link for more information
http://www.centrevents.co.uk/supportedliving.html

Please click here to book
http://www.centrevents.co.uk/book-online.aspx

Gemma's Artistic Contribution

Gemma would like to share with you some of her beautiful art and craft work.  We are lucky enough to house Gemma's pictures on our walls at Beyond Limits.  The wonderful dragon is sadly just on loan to us!  Isn't he fabulous!







Sam Sly's March/April article for LDT

The piece below was written by Sam Sly from Beyond Limits for Learning Disability Today magazine to be published in March/April 2012


Learning Disability Today Column


Independent thinking
Sam Sly reviews the progress made in the first six months of the NHS Plymouth individual health budgets pilot
Beyond Limits is partnering with NHS Plymouth in its three- year project to explore and implement individual health budgets for people with learning disabilities currently in out-of-area specialist hospitals who want to return to their roots and to a home of their own. The project is also redesigning NHS Plymouth’s commissioning processes to be more person-centred.
After completing the first six months of the project these are some of highs so far and the challenges we still face.
Highs
People: We have often been told that the person who we are planning with will either be too complex, challenging or dis-interested to contribute to their planning meeting. When you reflect what ‘meetings’ have meant to these people in the past – reviewing and imposing restrictions with a room full of professionals, and discussion and decision-making they find hard to contribute to – it is understandable people are disinclined to be involved.
We have found quite the opposite with our meetings because the service design process is about planning with positives for the future, including people’s gifts, skills, hopes and dreams. We have found people to be fully engaged, staying throughout the planning day and contributing positively.
We have been privileged to meet people with such potential, gifts, skills and zeal for life. These people have hopes and dreams that are achievable, just like anybody else. It has astonished us all how quickly a person thrives and grows when they feel safe, happier and in control.
Families: We have been honoured to meet and work with some amazing families who have shown such resilience in the face of adversity and have continued to champion and stand by their loved ones while they have been moved around the country often to more and more secure accommodation.  
Feedback so far from families has been that the processes we use make them feel included, listened to and valued; something sadly lacking for many of them for years previously. Even those who have Nearest Relative rights have often felt excluded from important decision-making meetings, often purely because they physically or financially have not been able to get to the meetings, which are sometimes hundreds of miles away from home.
I have sometimes underestimated the importance and connectivity of family to the people we are working with, whether the relationships are healthy ones or not. Family is definitely the cornerstone of relationships and community integration. And family members are your greatest ally in getting it right for the person they love.
People’s support teams: Feedback from the teams employed so far is that they find their new roles tough but very rewarding. Working with one person means they can concentrate on making it work for them. The planning process we have used ensures that a person’s team (numbers, attributes and personalities) is planned with them before they move. Also, the team induction and training is specifically around the person’s needs. Feedback indicates that they are therefore gelled and confident in their knowledge of the person and more connected when supporting them.
Challenges
Life stories: It has been with heartache and anger that we have listened to disturbingly similar stories of rejection, segregation, detention and people moving further and further away from their home and family and into increasingly secure establishments as they have fought against systems that don’t work for them. People have had to learn new, usually more extreme and negative ways to gain the attention they deserve. We have to continually deliberate on how we stop this happening in the future.
Developing truly community connected services: We are still not there yet, although awareness is a good starting point. I watched someone we support recently who was enjoying being with their team, and had started to do more out and about, but this presented a paradox: we want the person to trust and feel safe with their ‘paid’ team, but equally we don’t want reliance on ‘paid’ relationships we want real reciprocal relationships that will be the foundation of the person’s new life. We need to ensure this begins from day one.
Using assistive technology: I believe in using assistive technology (AT) wherever and whenever possible to give independence and quality to a person’s life but I am no expert! A fellow support provider we work with, New Key (www.newkey.org.uk), is leaps ahead of us in the use of phone apps, iPads and all sorts of other gizmos. We need to get better at using AT as a given and not an after-thought.  

Beyond Limits launch event

Beyond Limits launch event was held in Plymouth.

Get the flash player here: http://www.adobe.com/flashplayer

Update on Individual Health Budget Project with NHS Plymouth

Beyond Limits are now into the final months of the first year of the three year project. We are excited to have been successful in securing the final two years of the project and having Dr Simon Duffy of the Centre for Welfare Reform  http://www.centreforwelfarereform.org/on board to carry out an evaluation. An end of first year report will be published in May/June 2012.

We have now worked with 5 people currently in Institutional Hospitals across the country and their families, to prepare Service Designs and Working Policies for their new lives in their own homes. We are also working with NHS Plymouth to test out new processes and Commissioning Strategies to support this new way of working.

Some highlights so far have been:-
  • Great feedback from families who feel involved, listened to and included in decision making.
  • Good feedback from Hospital Providers who say this is a positive way of planning with people.
  • People being at the centre of the planning process and enjoying being listened to and making decisions about their futures.
  • Being "bowled over" by the gifts, skills hopes and dreams of people who can't wait to start their new lives.
  • Supporting our first person.

Sharing knowledge

Over the next couple of months, we will be setting up a forum for like-minded providers of support so we can begin to share best practice, form alliances and start to change the face of services in the South West.

Getting going

Beyond Limits  is a brand new organisation but it's not starting from scratch. It will work in a similar way to Partners for  Inclusion, a leading Scottish organisation. Partners has pioneered individualised services over the last 15 years.

Beyond Limits  is now registered with the Care Quality Commission. We have just set up our second Team and are looking forward to supporting people in getting on with their lives.