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Sarah’s story

Here, Sarah shares some of her story about caring for her young adult daughter who is diagnosed with Autism Spectrum Disorder.

Tell us about the person who you care for. How old are they? What sort of things do they need help/care with?

I care for my daughter who is now 20 , she needs help with daily social/ living skills. She has Autism Spectrum Disorder (late diagnosis 3 years ago), and has had a huge mental health crisis during the Covid-19 pandemic which resulted in her having to be hospitalised. She has had the most horrendous year and has been traumatised because of it (as have we her family) .
As a result, she now needs help on a daily basis. Her daily needs include: Daily living & independence skills, needing to be heard in a trusted relationship, feeling safe enough to show her need and managing new and different situations (which is very hard for her). She is building trust in her PAs and has other key supports in her church, family and a small number of trusted professionals.
She is an amazing, funny, intelligent person who is working very hard to understand herself and manage life. I am very proud of her journey.

How much of your time each day/week do you spend caring for your family member?

Currently, we are provided 25 hrs of care per week (2-1) and apart from times when she is in appointments, I am her sole carer and am available 24/7 the rest of the time. Sometimes she needs me in the night as she still gets recurring dreams of her time this past year when she stayed in a mental health hospital avoidance unit. Now at home, we can only have care at the times when the agency are able to provide staffing- not always at times when we need it.

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

Currently, even though we have scheduled care in the family home, I often still need to be available for crisis support.
When it’s a good day, I love to meet friends, go out for meals, do craft etc.
I would love to see family and friends that live at a distance. I love to go to church and volunteer to do activities.
When things open up more theatre is great to visit.

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

As a carer I have had to tackle a wide variety of issues by personal research and enquiry. It has felt that on each occasion I have had to gain skills in unfamiliar areas when there should be information available.

For example : education (EHC) tribunal, legal action, safeguarding, mental health, social care, etc.
It would be helpful if there was a source for all these challenges in one place so you don’t feel like you’re alone and reinventing the wheel each time. Peer to peer advice would also be helpful.
Professional help seems there for the client but the carer may be traumatised, in need of support eg counselling etc , and are expected to continue until breakdown. Carer hubs seem to deal with a limited range of basic support. Independent support for carers in the form of a budget for counselling/ advice, etc would help prevent breakdown of care in the home.

How Imagineer have been involved to support Sarah and her daughter:

• Imagineer have provided Advocacy and Support Brokerage to help Sarah’s daughter to understand her choices about her support and to have her voice heard in planning meetings with Health and Social Care professionals
• Exploring options for Sarah and her daughter to self-direct their support using a Personal Budget rather than relying on a commissioned care agency service
• Researching options for housing, support and college courses
• Helping Sarah’s daughter to understand and exercise her rights and entitlements to support

At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.

If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

How can a person experience real choice and control to implement good support which works well for them; in a system where professionals and provider services hold all of the power?

Let’s look at an example:

Harry is a young adult who has been in the Health and social care system since he experienced a crisis at home with his parents. There had been a number of significant changes in his life to college, community-based activities and natural relationship-based support from people he knew well in his local community. These changes had removed all of the structure and familiar routine Harry needed to function well. Harry found all of the changes really difficult to cope with which resulted in him becoming highly anxious and unwell- eventually being admitted to hospital under the Mental Health Act.

From the beginning, there was a focus on the ‘mental health’ symptoms which Harry was displaying and no acknowledgement of his underlying needs; and (critically) his Autism diagnosis. As a result, Harry then spent several months bouncing between hospital units, the family home and inappropriate provider placements which did not understand how to meet his needs, as his anxiety levels continued to escalate. On a number of occasions, the local police had to assist in ‘subduing’ Harry and physically escorting him to the local A&E department (often causing physical injury and further distress to Harry).

Harry began to be labelled by health and social care professionals as ‘complex’ and ‘challenging’.

Multi-disciplinary meetings involving many professionals to discuss Harry’s support took place without involving Harry or his parents. Very few of these professionals who were making decisions about his future had ever actually met Harry in person! Harry’s anxiety continued to grow because he was not clear about the plan or the options for his future.

While this was happening, Harry had a change of social worker and moved to a new provider placement. Harry’s new placement was out of the local area – far away from his home community, his family and his friends (and definitely too far for Harry to access his home community without planned support to get there). It was intended to be a short-term placement while something closer to home was identified.

After Harry moved, the social worker and the support provider began to tell Harry that he would stay there long-term and that there were no options to return home to his local community. He was told that he should be grateful that there was a place for him to stay! Harry’s desperation increased as he did not feel safe or understood by those who were responsible for his well-being. The social worker and provider organisation actively discouraged the involvement of Harry’s parents (who had been advocating in his best interests the whole time) in meetings to discuss his future support; stating that Harry was an adult now and could make his own choices. Despite this, Harry was still not invited to his own meetings! Information shared with the new provider by the parents about Harry’s processing, communication and sensory needs were dismissed. The parents were made to feel like they were being a nuisance, and were very concerned that they were not being taken seriously.

Harry’s story is real (the details have been changed for anonymity). Sadly, this is not an isolated example.

At Imagineer, we are often approached by people or family members experiencing very similar scenarios of having no power and no voice to influence how their care and support is arranged – often with extremely damaging consequences to their psychological, emotional and physical well-being.

What is wrong with the above scenario?

1. Harry was not involved in any of the meetings or given the choice, or appropriate independent advocacy support to be involved fully. His parents were blocked by professionals in the Multi-Disciplinary Team (MDT) from having any involvement in decision-making.
2. Harry was told by his social worker about what he could have as a commissioned service (without any reference to other Self-Directed options). It wasn’t presented as a choice. The service provided to Harry was from a ‘framework’ contract/approved provider list selected by the Local Authority commissioning and procurement process- no consideration was given to other options that Harry could consider outside of this process.
3. Harry was placed with a support provider away from his local area, far from family, friends and local community connections – he felt isolated and scared.
4. The failure by the MDT and the support provider to recognise Harry’s communication support needs and to understand how he processed information and made decisions, further impacted on his anxiety levels and led to him being further labelled as ‘challenging’.
5. The process of arranging Harry’s support took place without any acknowledgement of Harry’s autism diagnosis and without any reasonable adjustments which would help him to feel in control and understand his choices.

What should be in place to help people like Harry and his family to experience real choice and control and to ensure that professionals and provider services don’t hold all of the power?

1. Care Act 2014/Children and Families Act 2014 guidance states that the Local Authority should involve the person and their family throughout the whole process – professionals should listen to and take on board information provided by the person and their family/representatives.
2. Advocacy – the person should be given an opportunity to involve somebody (whom they choose) to be their advocate. If they don’t have anybody who can act in this capacity, the Local Authority has a duty to provide this service. The advocate should act independently of the Local Authority and in the best interests of the person.
3. Independent information, advice and guidance/signposting/navigation through the social care process should be available – Harry and his family should have been given clear information about all Personal Budget options without any feeling of pressure or underlying agenda to choose a particular option.
4. The social care process should be worked through logically to support the identification of a Personal Budget option which gives maximum choice and control (Eg. Direct Payment/Individual Service Fund) – Harry should be able to make an informed decision about the best Personal Budget option for his circumstances. No professional should make this decision on his behalf unless there is a concern about Mental Capacity or Safeguarding which has been assessed and documented.
5. Support Brokerage input could be accessed by Harry and his parents to research, cost and broker a package of accommodation and support which works for Harry so that they are able to make an informed choice which is not externally influenced.

Are you interested in finding out more?

Imagineer offers a range of training and mentoring services to support the knowledge and practice development of practitioners; and also to help people to know and understand their rights.

Visit our training pages which can be found under the menu heading ‘What We Do’ for further details; and subscribe to our mailing list to be kept up to date with what we’re doing. 

Further reading:

To keep up to date with citizen’s rights in relation to the provision of advocacy and involving those people who are close to them when planning health and social care support; refer to:

• NHS England Transforming Care supplementary guidance for commissioners
• Care Act 2014
• Children & Families Act 2014

About us:

Liz Leach Murphy is the Founder of Imagineer Development UK CIC, Chair of the National Brokerage Network and a Freelance Consultant working on personalisation within the Health and Social Care sector/community space.

Sarah Holmes is a Freelance Consultant working on personalisation within the Health and Social Care sector/community space; and a Director of Imagineer Development UK CIC

Both Liz and Sarah are practitioners, trainers and coaches in Independent Support Brokerage and consultancy for Strengths-Based Approaches with collectively over 40 years of experience in the Health and Social care and community sectors.

Imagineer Development UK CIC is a social enterprise based in the North of England with a national reach; originally set up as a test bed for Independent Support Brokerage in the UK. Imagineer is the hosting organisation for the National Brokerage Network, which is a community of practice for Independent Support Brokers. Imagineer provides a range of training & consultancy services in Support Brokerage, Person-Centred and Strengths-Based Approaches.

Follow us on twitter: @imagineercic

Find us on Facebook: https://www.facebook.com/ImagineerCiC

Find us on https://www.linkedin.com/company/imagineercic

How can you make an informed choice and be in control of your life when you don’t understand what your choices are?

Let’s imagine you’re visiting a friend for dinner, and at the end of the meal, they get their box of ‘Celebrations’ out. (Apologies for the English chocolate reference if you are reading from a different part of the world where these are not available….Celebrations are a box of chocolates with a random selection of miniature varieties of chocolate bars).

The box is already open and it appears that there are only two options left- the ‘Bounty’ sweets and the ‘Milky Way’ sweets.

You really want some chocolate and neither of those brands would be your favourite. But because that’s all you have to choose from, you go with a ‘Milky Way’. Sound familiar?

Now imagine a different scenario where you visit your friend for dinner and they bring out a brand new unopened box- with all of the different varieties to choose from. Would you still choose the ‘Milky Way’?

I know I wouldn’t!! (It would either be a ‘Galaxy’ or a ‘Teasers’ sweet for me).

When one or two options are the only choice you’re given, that’s what you’ll choose from. You might not even think that you have a choice! Maybe you have been told that there isn’t a choice and you should be grateful for what you’re being offered!

What happens when you have the whole range of brands available? Would your choice be different? Probably!

It’s the same with choosing care and support options for planning, arranging and implementing Health, Social Care and Welfare support. Many people are only told about one or two options at the point of assessment. Some people aren’t told that they have a choice at all – they are simply told what they can have.

This simply isn’t right. The Care Act 2014 outlines the range of options available to a person who has been assessed as eligible for support.

So often, people aren’t made aware of their rights when accessing Care and Support.

So how do we help people to make informed choices?

• We need to have a universal source of clear and accessible information in a range of formats (Browesaloud websites, Easy Read information, Graphic/visual format, video etc) which explains the options for planning and arranging Care and Support. This should be available consistently nationwide, regardless of where you live and which local authority is funding your support
• Information, Advice and Guidance/signposting services should be universally accessible in community-based citizen services (such as Citizens Advice Bureaus, community hubs etc) with guidance workers who understand health and social care processes, policy and the wider welfare provision well
• The Health and Social Care workforce needs to have legally literate practitioners (those who are on the front line, engaging with people at the time they are making choices) who are up-to-date with the latest Case Law developments and can clearly guide people in understanding their options
• People accessing Health & Social care support should be made aware of and be able to exercise the opportunity (and right) to have someone independent (such as a Support Broker) assisting them in navigating the process, understanding their options and making informed decisions so that they feel they are receiving genuinely unbiased information in order to make informed decisions
• All front line workers should have the right training and knowledge to be able to support genuine choice and control. The training and baseline knowledge requirements should be embedded within guidance to ensure consistency on a national level

Are you interested in finding out more?

Imagineer offers a range of training & mentoring services to support the knowledge and practice development of practitioners; and also to help people to know and understand their rights.

Visit our training pages which can be found under the menu heading ‘What We Do’ for further details; and subscribe to our mailing list to be kept up to date with what we’re doing.

Further reading:

To keep up to date with case law and to improve your legal literacy in the area of Health & Social Care law, visit:

Luke Clements website

Cascaidr Website

About us:

Liz Leach Murphy is the Founder of Imagineer Development UK CIC, Chair of the National Brokerage Network and a Freelance Consultant working on personalisation within the Health and Social Care sector/community space

Sarah Holmes is a Freelance Consultant working on personalisation within the Health and Social Care sector/community space; and a Director of Imagineer Development UK CIC

Both Liz and Sarah are practitioners, trainers and coaches in Independent Support Brokerage and consultancy for Strengths-Based Approaches with collectively over 40 years of experience in the Health and Social care and community sectors.

Imagineer Development UK CIC is a social enterprise based in the North of England with a national reach; originally set up as a test bed for Independent Support Brokerage in the UK. Imagineer is the hosting organisation for the National Brokerage Network, which is a community of practice for Independent Support Brokers. Imagineer provides a range of training & consultancy services in Support Brokerage, Person-Centred and Strengths-Based Approaches.

Follow us on Twitter: @imagineercic

Like us on Facebook: https://www.facebook.com/ImagineerCiC

Follow us on LinkedIn: https://www.linkedin.com/company/imagineercic