Your Choice Barnet Week - Care, Compassion, Choice and Quality of Life for Disabled People and Family Carers - Guest blog by Linda Edwards

Linda receives her MBE with Rachel

By Linda Edwards MBE,

Having been invited to contribute an article to The Barnet Eye "Your Choice Barnet" (YCB) week, I felt unable to write. What could I say when I have no personal experience of YCB?  However, I do have experience of care, compassion, choice and quality of life for disabled people and their family-carers.

I struggled to search for a connection, something inspiring to link what is being proposed by YCB to my daughter's experience in the "care industry".  I realised that what is being reported resembles the many years Rachel, my learning-disabled daughter, who is also on the autistic spectrum, became a commodity instead of a human being.

Rachel’s previous service providers, including Barnet In House Supported Living, made her depressed, institutionalised and compliant.  Pavlov's dogs had a better experience than my daughter, whose only way of survival was to be "a good girl"!  She was put at risk, neglected and taught to operate by automation and fear rather than encouraged to use her own thought processes and abilities.

From 2007 Rachel had been telling Barnet In House Supported Living Service and the bullying service provider later commissioned by LBB Health and Social Care, that she “needs her routine". When staff didn't arrive or were late, she would scream "They've let me down again.”  “They're confusing me.”  “They mess my head up."  Now how clear was that? 

Yet, Kate Kennally, now Director of People, and Amanda Jackson, then employed by YCB and now departed to Hillingdon Borough, refused to remove this bullying service provider. Neither of them were interested in listening to Rachel or giving her any choice.  Her quality of life was dismal, institutional and she lived in fear of the continual incidents created by staff putting their own needs first because they were not supported appropriately by their managers. When her behavior demonstrated she was depressed and miserable, she was referred to a psychiatrist!

In the past 15 months Rachel has been with a new service provider and at last, for the first time in her life, she has begun to live as a human being.  This is because…. she is now being treated as a human being. 

It is not always easy for her, especially because of the many years of institutionalised  service provider culture, conditioning, being controlled, neglected, told what to do, what to say and how to ‘people please’ – she is now learning there is another way.  Now she not only has my encouragement to make real life and informed choices for herself, she also has the support and encouragement of Susan, her new Supported Living Manager, and her staff team. They communicate, listen and hear what Rachel needs and wants; they work in partnership with me and demonstrate that they actually care. Together we celebrate Rachel's "Magic Moments” and she is so proud of her own achievements in her new life. 

What family carers need to see in a service is that their disabled child’s physical, emotional and spiritual needs are met.   They need to see their child is valued by everyone and fulfilled in doing and being the best he/she can be.

·         Rachel has begun to value herself because she is valued.

·         She has begun to believe in herself because all around her believe in her too.

·         The more responsibility, encouragement and autonomy they give her, the more she thrives and soars. 

Susan is a firm and fair manager with old-fashioned values. It is so easy to respect her because she is proactive in managing issues and has never been defensive - this is a complete contrast from the two previous service provider managers who always blamed me for whatever went wrong under their responsibility.  Susan’s genuine desire to ensure the best for all the people who are her responsibility and her truly person centred approach is awesome to me. I welcome her advice because it comes from an empathic, compassionate and genuine heart.  I promised the organisation 16 months ago that I would either be their best ally or the parent from hell!  It is such a relief to work in partnership with Rachel’s service manager, who shares humanity and humility with Rachel. 

Now we need to ensure all vulnerable people have the same respect and esteem from our community, and especially from the people who are responsible for commissioning and providing services.

Experience has taught me that a service for vulnerable people is only as good as the people working within that service.  This includes senior managers who are role models for the culture of the organisation, crucial for ensuring the organisation is fulfilling its lawful obligations and ensuring staff working with vulnerable people are given appropriate support, training and encouragement.  Managers have to ensure they create the best teams possible to value each individual for their own unique gifts, talents and skills.  This costs no money but only happens when an organistion is healthy and holistic and has a clear intention to put into practice everything they say and write.  Once an organisation becomes contaminated with a culture of bullying, scapegoating, devaluing, shaming and blaming everyone is engulfed in fear.  Fear ensures that communication becomes oppressive and defensive and so the culture continues to be contaminated. Fear prevents fun, creativity, compassion and healthy and equality based relationships.  We must address the current disharmony and fear for so many disabled families in the London Borough of Barnet and celebrate decent values and practices that put the disabled family in the centre of all decisions.

The Staff item of a budget is usually the most costly item of any service so it is easiest to cut this part of the budget first.  Sometimes it is necessary.  Indeed, sometimes it is essential.  Staff working with vulnerable people whose crucial role it is to create a relationship of trust and respect, reliability and consistency must not be preoccupied with worry about their own working conditions.   It is essential that people working with vulnerable people, feel valued and respected by their management so they are not overburdened with their own survival needs. Their presence needs to be available, open hearted and present to the people they are with.  How many times have you been with someone who you know is not present with you?  How did it make you feel? Disabled and elderly people know whether someone is present with them and will feel, respond and react accordingly. 

Rachel was my inspiration for creating Larches Community with £50 in our home.  Now hundreds, possibly thousands, of disabled people living in the London Borough of Barnet have benefited. Rachel and her peers have been my teachers; leading, advising and showing us what they need to have for the quality of life they deserve.

Will YCB provide this? I would like to hope so.  From some of the things I have read and heard it feels like we are going back less than 100 years ago to when disabled children were thought of as uneducable. 

What appears to be happening with YCB shows much the same culture as when disabled people were dumped into large hospitals, living an institutional life and treated as a commodity.  It doesn't help those violated people that we now know better and that what was done to them was as a result of ignorance. 

We are enlightened now.   London Borough of Barnet employ (directly or indirectly) highly paid directors and managers of Adult Social Care and Health who well know the legislation, government requirements, what constitutes good practice and what ensures people have a good quality of life.  As Kate Kennally ignored my daughter’s pleas to remove the oppressive regime that was making her depressed and repressed, are they so far removed from the vulnerable people they are employed to serve that they ignore what they now know?  This is far worse than 100 years ago, when there was ignorance, because now we know, and we appear to be ignoring what we know!

“Those who cannot remember the past are condemned to repeat it.”

 George Santayana, Spanish philosopher

What sins are we committing when we can remember but ignore the past?  What would it take for the London Borough of Barnet to demonstrate that providing care and services requires more than what appears to be proposed by YCB? 

Simplicity!

Phase 1. Draw a circle and place in the centre the people and stakeholders concerned: people with learning and physical disabilities, the Local Authority Trading Company, family-carers, professional carers, significant others.

Phase 2. In columns around the circle list:

·         What is needed: be specific – aim to write millions of needs (“blue skies”) and later reduce.

·         How can we meet those needs? Again, think (“blue skies”) in and out of the box.

·         Who is going to take responsibility? A truly joint partnership using everyone's gifts, skills and talents is possible with open hearts and intention.

·         By when? Phases need to have time lines.

·         What else do we need to make the above happen? Resources, finance, etc.

Phase 3.  Action – putting this into practice.

Phase 4.  Evaluation and Monitoring – this must be done with integrity and involve everyone, including……… people who are dissatisfied with some or all of the service.

Integrity Action was founded in 2003 and views integrity as “The set of characteristics that improves trustworthiness to stakeholders.  Without integrity, measures to safeguard human rights, protect the environment, strengthen democracy, promote social equity and reduce poverty are compromised. In the absence of integrity the corrupt flourish.”  Their vision is “….For a just and equitable world, where citizens are empowered and integrity is central to vibrant societies.”

Their Mission is to empower citizens to act with and demand integrity.  They actively take part in building institutions to promote a state that is open, accountable and responsive to their needs and expectations.

Their approach in institutionalising integrity requires the alignment of four factors:

 • Accountability: Enabling stakeholders to check that we do what we say we do

 • Competence: Doing it well

 • Core values: Doing it with honour

 • Corruption control: Doing it without corruption

Integrity Action’s approach to integrity is this formula:

Integrity = Accountability + Competence + Ethics - corruption

http://www.integrityaction.org/what-integrity#sthash.AzYEBK2z.dpuf

Recently Larches Community was invited to participate in the annual Learning Disability Today Exhibition at Olympia together with Frameworks4Change. This is a sharing of a "Magic Moment" I feel so privileged to have experienced; something that has been in my heart since that day knowing that it is this kind of spiritual experience that makes many of us get out of bed in the morning. For me, this story makes all the Larches Community cashflow sleepless nights worth every anxious moment.

"John" is completely dependent for all his needs on his care staff. Throughout the day he uses a chair and is fed through tubes. We have been told that his only communication is spitting and that staff prefer not to work with him.  At the Larches Community we don’t always believe what we are told and our biggest knowledge about the person is gleaned by watching, observing, reflecting, asking and just being with the person!  Whilst his staff clearly enjoy being connected to people, they don't seem to believe that he does - we often see John and his chair facing the wall in the opposite way to people and activities.  John seems to enjoy his day with us at Larches Community Programme, especially activities with music.

"The longest journey is from the head to the heart" Carl Jung

We had a soul-searching dilemma about how to travel to the Exhibition.  We could have gone in one or two mini buses at very little cost and John would have travelled by mini cab with his own staff. This would have been a sensible ‘head’ decision.  However, we made a 'heart' decision to search for a coach that could remove rows of seats to accommodate John so we could all go together. Inclusive means All!  This cost us several hundreds of pounds that we didn't have a budget for and I am still explaining!

We participated in the Compassion discussion group led by Frameworks4Change. We were in a circle facing the centre and each other. Again, John was placed facing the wall.  I gently turned John’s his chair around so that he could face the group and Francis, who was facilitating our group.

Throughout the session John made noises. Each time Francis stopped talking and acknowledged John's contribution. We couldn't have known what John was communicating with us.  Did he feel a part of the group? It was only after reflecting much later that I thought this might have been a rare experience for him to be acknowledged, honoured and valued for who he is – as Francis had done when he stopped talking to acknowledge John's contribution.  I truly treasure how Francis was a role model to us and how we have all learnt another way of being. He broke boundaries to allow and encourage John to speak whenever anyone else was talking.

At the beginning of the day John’s carer had been irritable and preoccupied.  Throughout the morning Charlie, one of our trustees, supported John's carer by chatting and encouraging. Later, I checked with Charlie to make sure he was surviving with what felt like considerable negativity.  We shared the thought that we could have removed this carer because of her attitude and behaviour towards John.  Charlie was on an unspoken mission to help her demonstrate her compassion and heart towards John and nothing was going to beat Charlie!  We both knew the carers gifts were available, but not yet present.  I really wasn’t sure that Charlie had sufficient time in a short day!

Later, during the Compassion discussion, John's carer spoke about how she feels valued at Larches Community, how we come into the hall and say "Hello" to her, ask her how she is and chat about little things. How she often doesn’t feel valued in this way. What is this lack of value towards carers doing to vulnerable people? 

On the coach my colleague thanked everyone for representing Larches Community and hoped that we had all enjoyed the day. John made a noise.  We looked at John and saw his hands had gone up and he was smiling. Everyone clapped. We hadn't noticed any spitting throughout the day. Why would John need to communicate in this way when he had been validated, listened to, respected and accepted?

We chatted to John's carer again and discussed how this was probably the first time John has gone to an exhibition and been acknowledged and validated for his unique contribution. We asked John’s carer to acknowledge her part in making John's day so meaningful. She beamed and became animated.

I hope that this story warms your soul too. You could ask: What use is John to society?  He can't walk, or talk or eat or look after his bodily functions and, yes, John costs money that we have to find in order that we may own we are a civil, caring and compassionate society! 

John is someone's child and brother.  In some cultures, he is everyone’s child. 

In that one day, John’s presence taught us that even simple things like belonging, experiencing the leader stop to acknowledge him and responding respectfully to his contribution had been felt deeply.  This was an amazing and wonderful experience and I feel so humbled to have been part of John's life and the group for that day.  It took integrity, intention, passion, love and compassion and was possible only because we ourselves feel valued and valued each other.  It cost us absolutely nothing else other than an expensive accessible coach!

At Larches Community we plough spare money back into services to benefit disabled people. This was our commitment when creating Larches in 1995 in my home with £50.00 and we haven't deviated from putting disabled people at the heart of everything we do. Larches Community staff have not had a salary increase since 2010 and the price of our courses remains well below the actual cost of providing experienced sessional workers whose expertise we cherish and value. 

 A quality service does not have to cost more money. At the end of last term one of our tutors asked if we had a budget to go to one of the three coffee shops in Edgware (some would call this “out and about in the community”). The cost would have been approximately £50.00. The service users would have had the experience of drinking in a coffee shop – so what?  Instead they invited their families to the last session and we all made bath salts and shared homemade cake and tea made by our learners. Such delight with everyone choosing which colour bath salts they made for themselves and another person, and working in collaboration and comradeship with each other. 

Costs are always an issue when discussing care and services, and there is something everyone seems to have forgotten.  There is no legal obligation for parents to provide housing to their adult children over the age of 18 years. Has anyone worked out how much it would cost government and local authorities if parents refused to have their disabled adult children live with them providing 24/7 care? We must acknowledge that these families are 'on duty', with love, even when their adult children are using services.  Has anyone worked out how much family-carers are saving local authorities with their dedication and lifelong commitment?

·         When an adult disabled person is sick whilst using a day service, who is called to collect them? It is the parents of course.

·         Who then coordinates doctors and hospital appointments for the disabled adult?  It is the parents of course!

·         Who then stays at home to look after the adult disabled person for the duration of the illness?  It is the parents of course! 

 These are the harsh facts that make the lives of parent carers so different from those of other parents, who have hope that their children will have a fulfilled and creative life, enjoying education, a career, marriage, children, holidays and other ordinary life events.

Our family carers have none of these hopes. For most of them their biggest hope is that people will care about and for their disabled children after they die. 

Their second biggest hope is that people will care about their disabled child’s daily life and provide the very best support and services throughout their lives.

Whatever informal support they have from family and friends, they cannot look forward to being free from the responsibility of ensuring their child gets up in the morning, has healthy meals, brushes his teeth, takes his medication and all the other tasks we do when our children are young and take for granted that when they reach milestones, they will do these basic tasks for themselves. At the age of 60, 70 and often 80, family carers of disabled daughters and sons will still be lying in bed at 5am listening for their child's waking noises as they did when their child was two years old.      

 

Many family carers live the whole of their adult life, into their winter years, taking care of their disabled sons and daughters, often ignoring their own ill health, until their own death. I am full of respect and admiration for these families who have devoted their own lives to taking care of their beloved children. Their courage and fortitude is exemplary and deserves all the medals given to people who do far less for humanity.

The example demonstrated to us by family carers should be applauded, supported and modeled.  Barnet Council should be insisting that all organisations provide services of excellent quality, appropriate to every disabled person’s individual needs.  Will YCB be a model all organisations will want to mirror?

Families of disabled children have been engulfed with emotion that only another disabled family has experienced, our community should be doing everything possible to help these parents, and often siblings, have some life of their own, knowing that their disabled child is well cared for, safe, stimulated and valued.

“Fanaticism consists of redoubling your effort when you have forgotten your aim.” George Santayanak

London Borough of Barnet could destroy the current YCB commodity culture. We could lead the way in setting an example to becoming a compassionate community if we listen and “hear” about the pain, practicalities and needs of disabled people and their family carers. It is easy to write and speak these words in order to “tick the boxes” but we need to work with integrity to put them into action for all vulnerable people in Barnet. 

Private companies see clients as a commodity.  Until they see my beloved daughter and all her peers as human beings we have to oppose the YCB culture of profit from disabled people.  Rachel’s life has begun at 40 years.  The highly paid people who kept her infantilized and conditioned to be “a good girl” know who they are but appear to have not learnt anything.  We have to ensure that all disabled people’s life is full of the same quality of care and service that my daughter is experiencing now, half way through her life.

We have learnt many lessons from Winterborne but have been too slow in putting all these lessons into practice.  We are still using many of the ingredients that created Winterborne and ignoring lessons. 

When will we ever learn?

Linda Edwards MBE

December 2013