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Peter’s story

Here, Peter shares some of his story about caring for his young adult son who has Profound Mental and Physical Disabilities.

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

He is now 20 years old with profound mental and physical disabilities. He needs 24/7 care, 2:1 during the day with a sleeping shift over night

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

Actually very little, but only because we have fought to get a Personal Health Budget (PHB) which has transformed the lives of the whole family. It is hard to manage and administer – but worth 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?

As above, we now have time breaks. I am now a PhD student looking into PHBs

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

PHBs are great, but there is no support for you run them. This support is what is needed.

How Imagineer can provide support to carers like Peter:

  • Imagineer can provide Information, Advice & Guidance to help carers like Peter to understand the Personal Budget or Personal Health Budget process; and understand their rights within that process
  • Imagineer can support with exploring options and providing assistance for developing a Personal Health Budget support plan to meet the person’s assessed needs
  • Imagineer can provide support to family carers and their family members during meetings with Health and Social Care professionals (such as Multi-disciplinary team [MDT] meetings)

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: to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit:

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 website 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:

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