"It’s the first thing I’ve ever been to where I felt empowered and positive. It’s so hard being a carer and most events highlight the negative. This event helped me think of ways to manage the stress and issues with being a carer"
The 2nd Carers Conference held at the Rufus Centre in partnership with ELFT was on the theme of Juggling Life and Caring. Emma Wilkinson, Chair of Carers in Bedfordshire warmly welcomed everyone and acknowledged that just to attend meant that there was a lot of juggling happening even before the day started.
Then Gail Dearing, Associate Director of Social Care, ELFT asked the participants to consider how many balls they were having to juggle. You might be working, you might be a parent, looking after a parent, arranging doctor’s appointments, collecting prescriptions, remembering birthdays, providing emotional support and at the same time you need to remember to look after yourself. But how do you manage when there are so many demands on you?
The first keynote speaker Yvonne Newbold, author of Special Parent gave a whistle-stop tour about her journey in the Special Educational Needs & Disabilities (SEND) world alongside her son Toby.
Toby was born with a rare genetic condition which no-one else in the world had. There were no specialists and apart from telling her that Toby would not survive and would not achieve much there was very little hope and support. However, Toby is now 25 years old, with a cognitive age of 2 years and is living in a local care home and enjoying his life.
At the age of 10 when Toby started to walk, he also started to hit her, and this led to 8 years of terror for Yvonne and her family. When they asked for help, there was none and to make matters worse they were then blamed for his behaviour. It took 2 years to get the right support and then things slowly began to improve and for the last 4.5 years there has been no violence.
Shortly after celebrating Toby’s 21st birthday, Yvonne was diagnosed with breast cancer. Unfortunately, the treatment was not successful, and she was told she only had 26 months to live. As a result, the top of her bucket list was to write the book she wished she had when Toby was diagnosed. The book, Special Parents has become a best seller and Yvonne was soon invited to give talks and presentation for the NHS. 6.5 years later, Yvonne is still working to help other families facing similar battles.
Yvonne is foremost a mother; but she has helped to raise awareness around dealing with a child’s violent and challenging behaviour (VCB) and currently provides support for 4,500 parents on Facebook. Her list of 10 top tips for SEND parenting, quickly turned into 20.
The next speaker was Matt Lant, a Psychological Wellbeing Practitioner from ELFT. He stressed the importance of doing a “mental health” check-in. He provided some tools that can help you to become more resilient to the challenges faced: Identify your achievements
- Use the 5 Ways of Wellbeing
- Do something you enjoy each day even if it is for 5 minutes
- Identify your values and live by them
- Write a journal to declutter your mind
Carers in Conversation
The 2nd part of the conference focused on the carers juggling education or work.
Juggling Caring and Education
Three young carers from Mark Rutherford School spoke about the challenges they faced whilst juggling caring and school. These include:
- Providing emotional support whilst at school
- Balancing household tasks with homework
- Feeling worried about going out
- Being kept behind after school
Mark Rutherford School has been running a Young Carers Project for 5 years. It sets out to identify young carers at the application stage. They are given a support card so they can access a teacher when needed.
Juggling Caring and Work
Next to speak was Stuart who is juggling caring and working at BT. Stuart cares for both his wife and his daughter whilst working full-time. Alongside his work commitments he needs to do all the housework, cooking and helping his daughter and wife manage on a daily basis.
He worries about whether he has done everything and feels anxious about spending enough time with his daughter.
His employer, BT has been very good. He was working 5 days a week in the office which involved a 2 hour commute each way but now he works mainly at home, so this gives him more time to do things for his family. He is also has flexible working hours so he can attend appointments when needed.
BT is very aware of carer needs. They have a Carers Network and you can talk to other carers for advice. There is a Carers Passport Scheme which documents your carer responsibilities and how it impacts your work and the reasonable adjustments that can be made.
Lunch & Mini Meet-Ups
Lunch was accompanied with the chance to speak to a number of organisations such as Bedfordshire Rural Communities Charity, Citizens Advice – Ampthill, Department of Work & Pension, and Healthwatch Central Bedfordshire, Disability Resource Centre and Advice Central.
There were opportunities to receive mini hand massages from Carers in Bedfordshire’s massage therapists.
The grand finale of the conference was a performance by The Great Gappo on how to juggle balls.
What did Carers learn?
To round up the day, carers where asked what they had learnt from the day:
- Making sure that you do make time for yourself and don’t feel guilty about.
- Quality of life is important.
- Taking time for yourself – writing a journal.
- Talking to others with the same problem is important.
- Focusing on planning more and worrying less.
- Focusing on your self-esteem as carers as it is easy to ignore it.
- We are “Ninja” parents.
- We are a wonderful group of people.
- We should celebrate our achievements.
What should we cover next?
There were a number of suggestions for future themes:
- Looking at “sandwich” carers.
- Caring across the generations.
- Dealing with the mental / psychological hurt caused by your caring role.
- Dealing with verbal abuse.
- More information on dealing with difficult behaviours.
- Knowing what services are available, what is happening in the community.
- How siblings are affected by caring.
Feedback from carers
- It was relevant, interactive and full of interesting things.
- Made me feel better than I have done for a while, I have reset my compass.
- Listened and we are all in the same position.
- These are valuable events that bring the Carers in Bedfordshire and ELFT communities together.
- Caring for a child is totally different to caring for spouses/parents. We need a conference about this.
- It would have been a good plan to have individual sessions for different categories of carers so we could exchange information with people with similar issues.
- Invite some of the local businesses who support carers in the workplace to the next event.