Here, Peter shares some of his story about caring for his young adult son who has Profound Mental and Physical Disabilities.
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
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.
As above, we now have time breaks. I am now a PhD student looking into PHBs
PHBs are great, but there is no support for you run them. This support is what is needed.
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: email@example.com 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?
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.
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:
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