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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:

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

It’s hard to believe it’s been a whole year since Boris Johnson announced that we must ‘Stay at home, protect the NHS & save lives’.

Although it’s important to acknowledge we have not been in actual ‘lockdown’ for a full 12 months and there have been varying levels of restrictions at different stages; the impact has been felt far and wide. Many organisations involved with supporting people directly in a face-to-face context had to work out ways of doing things differently.

At Imagineer, we set about very quickly in thinking about how we could adapt our different services, delivery style, support and engagement to ensure continuity for all of the different people and organisations we work alongside.

Early innovations

Early on at the beginning of the pandemic and the first lockdown in 2020, we developed a ‘Support your street’ resource for free; which was available for people to download and use in their local community to support neighbours who were isolated, shielding or unwell. The resource was advertised via our social media channels and 20 people requested it for use in their local communities.

We also set up weekly ‘Brew Crew’ online coffee morning sessions (using the zoom platform) which were primarily set up for the people we regularly engaged with and provided Support Brokerage to- as a way of keeping them socially engaged and connected while ‘staying at home’. We delivered 36 of these sessions and had 9 regular attendees, whom we have been able to remain connected and engaged with. The people participating in the sessions have also provided peer support to one another during a very lonely and isolating 12 month period.

Changes to our usual service delivery

We worked fast to adapt the delivery of Support Brokerage, Brokerage Management and Support Brokerage Training so that this could continue online, using the zoom platform. Team Imagineer very quickly developed and honed their skills in using the platform to hold meetings, deliver webinars, provide mentoring support and training.  We also used the zoom platform as a way of continuing to engage with the people and families we work alongside.

As a result of working in this different way, we have:

New services

As a small, local and community-based organisation in West Yorkshire; the adaptation of our service delivery to an online platform immediately increased our reach and our engagement, and we have grown our networks significantly over the past 12 months by virtue of moving to nearly 100% online engagement and easier accessibility for people and organisations further afield wishing to connect with us and our work.

We saw an opportunity to share our years of experience, tools and resources we have been developing- increasing our connections and understanding of what is happening on a wider scale; by starting to develop a range of different webinar learning and engagement opportunities.

These have included:

Quick Bite for Lunch webinars

We recognised the need for people to stay connected during the pandemic. All of the usual methods of networking were unavailable to us because of lockdown rules. We decided to develop a series of Lunchtime networking webinars online and based around a key theme. Each ‘series’ has 6 sessions. The webinars run over lunchtime on Wednesdays for 30 mins over 6 consecutive weeks to explore different topics related to the series theme. People could bring their lunch and listen to a short introduction on the topic for the week, followed by an opportunity for a group discussion and a place to share stories, best practice etc. We have run 2 of these series so far- the first was on ‘Person-Centred Approaches’, and the second was on ‘Rights’ in relation to Health and Social care Support.

In total, we have delivered 12 of these sessions, with regular attendees. Our third series on ‘Rediscovering Communities’ is starting on 14th April (there is still time to book if you’re interested in attending!) We have used feedback from previous session attendees to develop the content for future series, based on what people want to hear about. We now have a plan for regular series throughout the rest of 2021 and into 2022!

Deep Dive webinars

Some of the feedback we had been receiving from people who had undertaken the Support Brokerage training was that they would value some ‘deeper’ detailed training into specific areas of knowledge and practice in relation to Support Brokerage, and the wider context of Health, Social Care & Community Development. We began to develop content for some more detailed and in-depth webinars which would last longer (1-2 hours) and we named these ‘Deep Dive’ webinars. Again, the content has been developed from themes which people tell us they would like more information about. The Deep Dive webinars are designed to be interactive and practical- enabling attendees to interact with each other in small groups to put their learning into practice and explore some of the deeper challenges and issues. So far this year, we have delivered two Deep Dive webinars on: ‘Having difficult conversations’, and ‘Developing a complex support plan’. Both webinars have been well received and these are now planned regularly throughout the year on the first Tuesday of each month.

Thought Leadership webinars

One of the opportunities with moving our work to an online platform was being able to engage with a much wider audience to develop relationships, networks and conversations about doing things differently and better.

As an organisation, our social mission is ‘To facilitate an empowering society and culture that supports people to live their best lives’, and so we are always keen to connect with others who are working towards the same goal and who have a desire to make a real and lasting change in society.

We decided to invest in developing and delivering some ‘free-of-charge’ thought leadership webinars in order to reach out and make connections with more people and organisations. So far this year, we have delivered 1 of these webinars: ‘Exploring the strength of community’ and we are preparing to deliver another webinar entitled ‘What does ‘good’ look like?’ in April. Both webinars are based on the content of  two papers we wrote and published in the past year (see below for more details).

E-learning

Moving most of our work to online platforms also encouraged us to overhaul our website and to restructure it as the central point from which all of our activities can be accessed. We have been working with our friends at Pivotal to make these changes, and we are really pleased with how it is shaping up! Part of the website development work has included developing an e-learning platform where we will be launching online training in addition to our zoom-based webinar and  training delivery. The first course which has been developed is Graphic Facilitation and this is now live and available to book. We are looking forward to releasing our next few elearning courses within the coming months.

Blogs

One of our commitments this year has been to share about our work more regularly. We have published a total of 13 blogs on the main Imagineer website; and Mollie has also been busy developing some blogs about Graphic Facilitation on the Big Picture Graphic Facilitation website too. There are plenty of interesting topics on the blog page if you fancy a browse!

Consultancy work

Doing the majority of our delivery work online in the past year has freed up a lot of travel time, and has enabled us to begin engaging on wider pieces of consultancy work with organisations who are wanting to work in new and innovative ways.

So far this year, our consultancy work has involved  helping organisations to train up their staff as Support Brokers; developing community-based welcome & advice hubs; providing information, advice and guidance support and training to family carers; helping support provider organisations to consider developing an Individual Service Fund model; and developing community circles and community brokerage models.

We’re really keen to help launch and support more projects of this nature. Our approach is always creative, warm and friendly. We encourage a working relationship with our consultancy clients which is collaborative and  inspirational. If you are interested in developing a new way of working or testing out an idea which will benefit citizens and communities, please do contact us for an exploratory conversation.

Publishing papers

Over the past year as we have reviewed our range of services, delivery style and range of activities we engage in as an organisation; it has afforded us the opportunity to reflect on the impact of our work, and where we want to focus in the future. Our reflections naturally developed into two papers which laid out our story and our thoughts to enable us to share this with others.

Exploring the Strength of Community

This was developed as part of a wider series of thought leadership work on Neighbourhood democracy, shared by Fellows of the Centre for Welfare Reform and Citizen Network, in June 2020. In this paper, we explored the challenges and limitations of the current welfare systems; and we explored and discussed the potential which was available within local communities which could help to meet need in a ‘Strengths-Based’ way.

We also presented the paper in the form of a webinar, which is still available to watch here.

What does ‘good’ look like?

This paper was developed as an update to the paper which Liz wrote in 2015 entitled ‘Reimagining Brokerage’.

As we began to write it, we realised we had many stories to share of our experiences of delivering Support Brokerage in the UK for over 10 years. What resulted was reflection of some really shining examples of best practice in relation to Self Directed Support; and also quite a lot of examples of where things have not gone so well- exploring some of the barriers and challenges which have been faced. You can read the paper here.

We hope this has given you a good flavour of our year in ‘lockdown’!

If you’re interested in any of our work, or would just like to connect, please contact us: info@imagineer.org.uk or subscribe to our mailing list to be kept up to date with what we’re doing.

A slightly different blog post

I’m writing this on my final day of self-isolation, having started with Covid-19 symptoms ten days ago.

From what I can gather, I’ve had a rather mild experience of the virus. I’m a healthy, active person. I’m not at risk due to my age, and I don’t have any underlying health conditions.

But I do live on my own, and I have spent ten very lonely and quite scary days not knowing what to expect and feeling overwhelmed by the plethora of information on the internet, the news, the TV and social media.

I’m really excited to be able to go out for a walk tomorrow when my self-isolation period is over, and I know I will be paying attention to what is going on around my neighbourhood with a fresh pair of eyes.

Here’s what I experienced over the past 10 days:

I have not known whether my symptoms are following the ‘usual’ pattern and timeline. I have not known when I can expect to be feeling better or felt clear about when it is acceptable for me to start working again. I have not known whether I am entitled to any financial support while I am not able to work.

I have not known whether to expect a sudden ‘dip’ in my well-being, after thinking that I am recovering.

I have not known when a day of no energy and very ‘foggy’ brain might indicate that I am getting worse or that I may need medical attention.

At my most anxious, I tried to call the NHS 111 helpline for reassurance as advised, and was greeted with a recorded message telling me that they were experiencing a high volume of calls and that I should look on the website for information.

I think one of the worst parts of the illness has been the anxiety.

It got me thinking.

Covid-19 is one of many many health conditions experienced by people in our communities; but there are so many people out there who live with this type of anxiety on a daily basis- due to long term physical or mental health conditions, disability or other forms of disadvantage.

Whilst my experience with Covid-19 has been very unpleasant, I know that I am likely to make a full recovery and return to a life without that level of anxiety and uncertainty; but for many people- this is their norm. For some people, they will go on to live with the symptoms of Long Covid for a long time after their initial period of illness has ended.

So what are the things that really make a difference?

(I focused on the information provided by the NHS test and trace service, and I avoided social media, TV etc because it was feeding my anxiety)

(I spoke to people I knew personally- who had already experienced Covid, and had since recovered)

(I chose key people who were happy for me to call any time I needed support. At my most anxious points, these people were checking in on me by phone on an hourly basis to provide me with reassurance that there would be help if I needed it)

(I had somebody who could run errands for me- collect medication, do my shopping etc)

(I had people who called me every day to check how I was and keep me company so that I didn’t feel alone whilst I was self-isolating)

(When I was feeling well enough, I had video calls with friends/family, played games online with friends, joined online quizzes, watched movies & TV, even silly video clips which friends sent to cheer me up)

The community efforts in your local area- what’s happening?

The community response during the Covid-19 pandemic has been incredible over the past year. Initially, we heard a lot about it in the news; but as the pandemic has dragged on, there seems to have been less and less of a focus on the community support which is available to people who are struggling. We seem to be hearing less of the good news stories of how people are helping each other and of how neighbourhoods are providing their own responses to the pandemic so that people do not feel alone or isolated.

So if you’re a community-based organisation; a faith group; a neighbourhood group or simply an individual who is offering support to the people in your local community who are alone, self-isolating, recovering from Covid-19, disabled, elderly or experiencing difficulty in any way- please make sure that people know how to find you, and then provide different ways for them to connect with you and others.

Here are some suggestions:

 

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 Sarah & Liz Leach Murphy 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.

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