Team members for Mike

We are 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.

Getting out of hospital

Beyond Limits predominantly plan with and then support people with learning disabilities and mental health needs who have had to spend often very long periods of time in Assessment and Treatment Units and Specialist Hospitals. 

We help people get put a service together that works for them using Individual Health Budgets (IHB), which involves a home of their own and a team matched to them (shared hobbies, interests, temperament etc.) or in other words a team that they like being with!

The process from start to when the person settles into their own home can be long and complicated so we have put together this fact sheet to help our teams understand what others do and what they need to do in the planning and transition process.

SERVICE DESIGN AND WORKING POLICY
  • Arrange and facilitate a service design meeting
  • This then forms a tender or can be used to RAS the Individual Health Budget
  • Arrange and facilitate a working policy meeting (to form the care plan with the provider/PA’s providing the support)
  • Ensure Court of Protection Deputy is necessary at least 6 months before housing is needed.
  • Look into any savings etc. that may be able to be used for more bespoke housing options.
  • From Service Design – team specification for advert and job spec and how family/person want to be involved in recruitment, housing specification, hopes and dreams for targets, natural and AT support requirements, next step actions, family role.
  • The working policy forms the starting doc to be worked on during transition by the team getting to know the person. It is done in a way that all known safety issues are discussed and plans formed with the multi-agency, family and person to agree robust support especially when things are not going well.
  • The costings need to include transition costs (period of time for staff to work alongside the person, travel expenses and accommodation expenses)

TRANSITION PLAN

  • Work out team hours, and make up of team.
  • Decide with person and family who will interview and how. Sometimes the Hospital will not let then attend so we have used video and the person coming up with questions. We also always send photos of interviewed candidates if family and us first interview.
  • Write advert with person/family based on ‘what people love about the person from the service design’ and a bit of the behaviours
  • Advertise roles in paper to start and our website – but when they move locally in shops too
  • Send the application forms to family for comments and selection and arrange interviews/initial meetings.
  • If person not able to come to interviews arrange how they can be involved (e.g. thinking up questions, getting the candidates filmed answering questions)
  • Interview with family/person. Team selected on ‘match’ over experience. Shared hobbies and interests. Experience needed for team leader though.
  • Once team have been employed they have a full Induction here and get to know service design and working policy.
  • We hire a house/accommodation near to the hospital and agree with the Hospital for our staff to start to shadow the person and team there.
  • Need to develop a working relationship with Hospital. Although they have been involved with service design and working policy so know what we are all about.
  • Arrange visits and shadowing. Support to complete daily notes, shadow as much as possible at different times of the day and night and ensuring they have knowledge of medication, seizures (if relevant), behaviours and routines.

MINISTRY OF JUSTICE

If people are on certain sections of the mental health act that involve the Ministry of Justice agreeing to the discharge arrangements then a plan involving them must be started as soon as a Service Design is being arranged. The Ministry of Justice will not agree a discharge if they are not assured of public safety. Their agreement is also reliant on housing being suitable to the person so this will mean planning the housing in conjunction with everyone involved.

COMMUNITY MAPPING

Locate GP surgery, dentist, opticians, podiatrist, local Hospital, eye infirmary and all relevant health related services and make referrals where appropriate. Obtain ID for the person – may require passport photos, letter from Care Coordinator.

Work out bus routes, start to look at local neighbourhood and identify key people and places, start to introduce arrival to local shops etc (all positives). Look for opportunities linked to the person’s assets in the locality – ways to contribute and give back.

Explore job and education opportunities. Think of ways to involve neighbours in arrival, garden party, BBQ, offers of cat feeding when on holidays etc.

HOUSING

When first starting service design process look at savings and whether there are any that can be used for house deposit or shared ownership. Also make sure if there is any issues with capacity to sign a tenancy or get a mortgage that the court of protection application is put in for (this can take up to 6 months). Get person on housing register with local council. Complete housing specification based on service design information.

If money then shared ownership or buying a house through a Trust will ensure the greatest security of tenure. If shared ownership is an option then this process should be started as soon after service design as possible as it takes time (as long as it takes to set up a mortgage and buy a house from the open market).

Use housing specification from the service design to search for an appropriate house.

Search for appropriate housing with those involved (remember to involve OT if any adaptations and care coordinator) and find a house, view house and a joint agreement should be made on suitability. Always involve person and/or family in the search. Houses cannot be bid on until there is someone in place who can sign the tenancy. Bid on a house through Council process, or arrange private rental or shared ownership arrangement.

Once tenancy is agreed, a meeting with Landlord to go through tenancy agreement is needed. They may want to understand the support package before agreeing a tenancy so the person should be away of this. The Landlord should be aware it is their duty to provide a tenancy in a format understandable to the person if they have capacity to understand a tenancy. There are many easy read versions and the Housing & Support Alliance are a good source of information if the Landlord is struggling. All info on support needed with a person’s tenancy should be included in their working policy.

Establish who the supplier of utilities are, when the bills start from (record readings on meters) and where shut off points are for the following: Electric, Gas, Water. Ensure the person has the best deal for utilities in conjunction with their Deputy if they have one.

If there are issues around fire or arson ensure that the fire prevention team are involved at service design stage and can advise on any fire prevention systems and escape plans that may be needed. 

If any restrictive practices are needed – alarms, sprinkler systems, sensors etc. ensure best interest meetings agree before installation.

BENEFITS

Ensure you have up to date information on benefit entitlements (some may have been suspended for the person whilst in Hospital) and knowledge of what can be claimed.

Ensure all benefits are applied for that are applicable.

FINANCE/BUDGETS

Ensure a plan is in place with person and appointee/families (where necessary) regarding budget (living expenses and bills etc.) that can be put in place as soon as they move. It should include all income and outgoing monies.

Ensure arrangements for staff food and drink are agreed with person and recorded in working policy both for whilst at home and out and about.

Set up bank arrangements for any support funds needed getting all team staff signatures.

HEALTH & SAFETY

Ensure a Hospital passport is put together and epilepsy or other health related plan (if appropriate) has been completed. There will also need to be a contingency/crisis plan developed with the community team, and any arrangements agreed and recorded about Guardianship or Community treatment or MAPPA arrangements and that the relevant police or other services have information about their roles on their communication systems.

Make an Introduction to GP and learning disabilities liaison nurse at local acute Hospital. If the person will frequent A&E a meeting should be arranged with a Consultant form A&E so that there is a joint agreement on how we all work together to manage admissions. The plan with A&E should extent to hospital admissions as well as sometimes the plan stops at A&E and people are treated differently when in the actual hospital. If ambulance travel is also used then they too need to be aware of plans (and have a plan on their communication system) to limit admissions (this is vital especially for people with personality disorder type diagnosis).

Inform the GP of the person’s intentions to register within their surgery as you may need to obtain ID and ensure medication is ordered and is ready to collect when the person arrives at their new home. Ensure the pharmacist is instructed to provide blister packs if required. Obtain any relevant aids of support e.g.: seizure bed alarm, iPad, sensors.

Write up a Police passport and contact police and meet with local community liaison officer. Support the team in understanding the passport so they can advise police if they arrive at the house.

Establish where the person will be taken if arrested under s136 e.g.: local psychiatric in-patient unit or whether they will be returning the person to their own home. Establish knowledge of an appropriate adult and support the team to understand their responsibilities and limitation’s.

Ensure any health and safety systems are in place: carbon monoxide alarms and fire extinguishers, blankets and means of escape.

CAPACITY ASSESSMENTS

Ensure team are aware of the mental capacity act and undertake these before the person, or soon after the person moves to their home so that you do not start off over-supporting a person:
  • Tenancy assessment
  • Medication Capacity Assessments
  • Financial Capacity Assessments
  • Capacity Assessments for other areas

__________________________________________________

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?

Team members for Howard

We are recruiting a team for Howard.  The team is coming together but there are still a few positions to fill in my dream team! Do you fit the bill?

Team members for Betty

We are currently working with Betty to help her live in her own home in Plymouth and achieve the dreams she has for her life. Betty is a funny, trusting, thoughtful young woman who likes to keep busy and shows an interest in most things but needs a lot of motivating and praise to carry things through. Sometimes Betty finds life difficult so you need to be positive, consistent, confident and motivating.

Team members for June

We are recruiting a team for June. June is a woman who loves to keep busy, is caring, sociable and great fun enjoying new challenges and getting out and about. June has learning disabilities and likes to have structure to her life to stop her feeling anxious.

Team members for Diane

We are recruiting a team for Diane. Diane is a young, energetic, intelligent woman with a zest for life. She is a very sociable person and has been described as an “adrenalin junkie” who needs to keep busy. Diane has mental health needs and her team will have to be flexible but consistent and calm and confident when she is testing their commitment to her. Knowledge of supporting people with personality disorder and/or who self-harm is required.

Team members for Tim

We are currently recruiting a team for Tim. Tim is very passionate about his hobbies enjoying steam trains, cars, music, books to name but a few. Tim’s team would need to be active, young at heart, strong and confident, drivers, have a sense of humour and able to take instruction from him. His team should not be nervous or risk averse, or have a monotone voice.

Team members for Carl

We are currently recruiting a team for Carl. Carl is a funny, smart young man who has an amazing memory and likes to look good. He likes people who like clowning about and being silly, reading and maps, music, cooking, walking, and people watching. Carl has Asperger's Syndrome, a learning disability and Bipolar Affective Disorder. He needs a team who are patient, calm, quietly spoken, and respectful and share his interests.

Team members for Alex

We are currently recruiting for Alex's team. Alex is a middle-aged, friendly, chatty man who likes his routines and enjoys art. He has an amazing memory and likes to ask questions. Alex has autism. He is looking for a small team of staff who need to be car drivers. A knowledge of autism and an interest in Assistive Technology would be preferable.

Team members for Laura

We are looking for team members for Laura who is arty, generous and great company. She also finds life difficult at times. Laura has an established team in place.

Application forms and job specs

Application form



Service Leader documents


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 £7.73 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

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 LEADER

We are very excited to warmly welcome our third new Service Leader to Beyond Limits, she will be joining existing Service Leaders Menna Bingham and Michelle Tucker in August 2014.

  We would like to introduce you to
Kath Dann.




Kath Dann




 Menna Bingham





Michelle Tucker

NEWS

GETTING OUT OF HOSPITAL



Beyond Limits predominantly plan with and then support people with learning disabilities and mental health needs who have had to spend often very long periods of time in Assessment & Treatment Units and Specialist Hospitals. We help people get put a service together that works for them using Individual Health Budgets (IHB), which involves a home of their own and a team matched to them (shared hobbies, interests, temperament etc.) or in other words a team that they like being with!
The process from start to when the person settles into their own home can be long and complicated so we have put together this fact sheet to help our teams understand what others do and what they need to do in the planning and transition process.
SERVICE DESIGN AND WORKING POLICY
Arrange and facilitate a service design meeting
This then forms a tender or can be used to RAS the Individual Health Budget
Arrange and facilitate a working policy meeting (to form the care plan with the provider/PA’s providing the support)
Ensure Court of Protection Deputy is necessary at least 6 months before housing is needed.
Look into any savings etc. that may be able to be used for more bespoke housing options.
From Service Design – team specification for advert and job spec and how family/person want to be involved in recruitment, housing specification, hopes and dreams for targets, natural and AT support requirements, next step actions, family role. 
The working policy forms the starting doc to be worked on during transition by the team getting to know the person. It is done in a way that all known safety issues are discussed and plans formed with the multi-agency, family and person to agree robust support especially when things are not going well.
The costings need to include transition costs (period of time for staff to work alongside the person, travel expenses and accommodation expenses)
TRANSITION PLAN
Work out team hours, and make up of team.
Decide with person and family who will interview and how. Sometimes the Hospital will not let then attend so we have used video and the person coming up with questions. We also always send photos of interviewed candidates if family and us first interview.
Write advert with person/family based on ‘what people love about the person from the service design’ and a bit of the behaviours
Advertise roles in paper to start and our website – but when they move locally in shops too
Send the application forms to family for comments and selection and arrange interviews/initial meetings.
If person not able to come to interviews arrange how they can be involved (e.g. thinking up questions, getting the candidates filmed answering questions)
Interview with family/person. Team selected on ‘match’ over experience. Shared hobbies and interests. Experience needed for team leader though.
Once team have been employed they have a full Induction here and get to know service design and working policy.
We hire a house/accommodation near to the hospital and agree with the Hospital for our staff to start to shadow the person and team there.
Need to develop a working relationship with Hospital. Although they have been involved with service design and working policy so know what we are all about.
Arrange visits and shadowing. Support to complete daily notes, shadow as much as possible at different times of the day and night and ensuring they have knowledge of medication, seizures (if relevant), behaviours and routines.
MINISTRY OF JUSTICE
If people are on certain sections of the mental health act that involve the Ministry of Justice agreeing to the discharge arrangements then a plan involving them must be started as soon as a Service Design is being arranged. The Ministry of Justice will not agree a discharge if they are not assured of public safety. Their agreement is also reliant on housing being suitable to the person so this will mean planning the housing in conjunction with everyone involved. 
COMMUNITY MAPPING:
Locate GP surgery, dentist, opticians, podiatrist, local Hospital, eye infirmary and all relevant health related services and make referrals where appropriate. Obtain ID for the person – may require passport photos, letter from Care Coordinator.
Work out bus routes, start to look at local neighbourhood and identify key people and places, start to introduce arrival to local shops etc (all positives). Look for opportunities linked to the person’s assets in the locality – ways to contribute and give back.
Explore job and education opportunities. Think of ways to involve neighbours in arrival, garden party, BBQ, offers of cat feeding when on holidays etc.
HOUSING:
When first starting service design process look at savings and whether there are any that can be used for house deposit or shared ownership. Also make sure if there is any issues with capacity to sign a tenancy or get a mortgage that the court of protection application is put in for (this can take up to 6 months). Get person on housing register with local council. Complete housing specification based on service design information.

If money then shared ownership or buying a house through a Trust will ensure the greatest security of tenure. If shared ownership is an option then this process should be started as soon after service design as possible as it takes time (as long as it takes to set up a mortgage and buy a house from the open market).

Use housing specification from the service design to search for an appropriate house.

Search for appropriate housing with those involved (remember to involve OT if any adaptations and care coordinator) and find a house, view house and a joint agreement should be made on suitability. Always involve person and/or family in the search. Houses cannot be bid on until there is someone in place who can sign the tenancy. Bid on a house through Council process, or arrange private rental or shared ownership arrangement.

Once tenancy is agreed, a meeting with Landlord to go through tenancy agreement is needed. They may want to understand the support package before agreeing a tenancy so the person should be away of this. The Landlord should be aware it is their duty to provide a tenancy in a format understandable to the person if they have capacity to understand a tenancy. There are many easy read versions and the Housing & Support Alliance are a good source of information if the Landlord is struggling. All info on support needed with a person’s tenancy should be included in their working policy.
Establish who the supplier of utilities are, when the bills start from (record readings on meters) and where shut off points are for the following: Electric, Gas, Water. Ensure the person has the best deal for utilities in conjunction with their Deputy if they have one.

If there are issues around fire or arson ensure that the fire prevention team are involved at service design stage and can advise on any fire prevention systems and escape plans that may be needed. 

If any restrictive practices are needed – alarms, sprinkler systems, sensors etc. ensure best interest meetings agree before installation.

BENEFITS:

Ensure you have up to date information on benefit entitlements (some may have been suspended for the person whilst in Hospital) and knowledge of what can be claimed.

Ensure all benefits are applied for that are applicable.

FINANCE/BUDGETS:

Ensure a plan is in place with person and appointee/families (where necessary) regarding budget (living expenses and bills etc.) that can be put in place as soon as they move. It should include all income and outgoing monies.

Ensure arrangements for staff food and drink are agreed with person and recorded in working policy both for whilst at home and out and about.

Set up bank arrangements for any support funds needed getting all team staff signatures.

HEALTH & SAFETY:
Ensure a Hospital passport is put together and epilepsy or other health related plan (if appropriate) has been completed. There will also need to be a contingency/crisis plan developed with the community team, and any arrangements agreed and recorded about Guardianship or Community treatment or MAPPA arrangements and that the relevant police or other services have information about their roles on their communication systems.

Make an Introduction to GP and learning disabilities liaison nurse at local acute Hospital. If the person will frequent A&E a meeting should be arranged with a Consultant form A&E so that there is a joint agreement on how we all work together to manage admissions. The plan with A&E should extent to hospital admissions as well as sometimes the plan stops at A&E and people are treated differently when in the actual hospital. If ambulance travel is also used then they too need to be aware of plans (and have a plan on their communication system) to limit admissions (this is vital especially for people with personality disorder type diagnosis).

Inform the GP of the person’s intentions to register within their surgery as you may need to obtain ID and ensure medication is ordered and is ready to collect when the person arrives at their new home. Ensure the pharmacist is instructed to provide blister packs if required. Obtain any relevant aids of support e.g.: seizure bed alarm, iPad, sensors.

Write up a Police passport and contact police and meet with local community liaison officer. Support the team in understanding the passport so they can advise police if they arrive at the house.
Establish where the person will be taken if arrested under s136 e.g.: local psychiatric in-patient unit or whether they will be returning the person to their own home. Establish knowledge of an appropriate adult and support the team to understand their responsibilities and limitation’s.

Ensure any health and safety systems are in place: carbon monoxide alarms and fire extinguishers, blankets and means of escape.

CAPACITY ASSESSMENTS:
Ensure team are aware of the mental capacity act and undertake these before the person, or soon after the person moves to their home so that you do not start off over-supporting a person:
·       Tenancy assessment
·       Medication Capacity Assessments
·       Financial Capacity Assessments
·       Capacity Assessments for other areas



__________________________________________________
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. 

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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.

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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?