Short Break Stories

Care to Talk

A story by Spina Bifida Hydrocephalus Scotland

We provided a weekend family conference for 40 families affected by Spina Bifida and/or Hydrocephalus.

Families enjoyed a weekend break at Crieff Hydro and were able to meet other families in a similar position and enjoy talks from healthcare and medical professionals.

What Care to Talk did

All families from the Stronger Links Stronger Families Project were invited but not all were able to attend.

Families arrived on Friday and we held a Carers dinner on Friday evening where parent/carers sat together and had a three course meal whilst their children were being cared for in Big Country. Big Country is staffed by a highly skilled childcare team, all PVG checked that offer a range of activities. All children were offered 12 hours in Big Country over the course of the weekend, and all children were offered an additional 3 hours of childcare with a dedicated babysitter.

This was to offer parent/carers much needed respite time, allow them to have a special meal, explore the facilities of the hotel and have me time which is in short supply for our families. It also gave parent/carers an opportunity to meet each other and build relationships.

Whilst children were playing in Big Country, parent/carers were invited to the Ferntower Suite where expert speakers from Royal Hospital for Sick Children Edinburgh provided up to date information on a range of relevant topics. Saturday evening was free time for our families, they could access family dining and use the facilities at the resort such as the cinema, on Friday night there was a family disco and on Saturday night there was a family Ceildh. Kids were dancing with each other and with the professionals from Royal Hospital Sick Children Edinburgh and there was a real sense of fun and community in the evenings!

On Sunday morning we reflected on the weekend, and on the importance of respite for parent/carers. We heard interviews from two parent/carers with different perspectives on respite, but both speaking clearly about the importance of it, and how it individually suits them.

Emily, aged 10, became known to the Stronger Links, Stronger Families Project in May 2015. Emily has Spina Bifida, is mobile and wears splints. When she was younger, Emily had mild Hydrocephalus but did not require a shunt. Emily and her family have occasionally attended support groups and outings through the project.

The family were invited to the weekend conference and decided to attend. Emily said she wanted to meet other children of a similar age to her. At the conference Emily had the opportunity to spend time playing with other children with varying degrees of Spina Bifida and/or Hydrocephalus and their siblings as well as other children staying at the hotel and attending the Big Country Children’s club.

Emily was excited about making new friends and she engaged in the wide range of activities available in the club. This allowed Emily to take part in activities that were stimulating, fun and rewarding. Emily and her family were also able to access mainstream activities due to the great facilities on offer at Crieff Hydro. Emily was able to go swimming, take part in the disco and go to the Ceilidh with her family and other members of the Spina Bifida community.

Emily's baby sister was not at the weekend retreat so Emily and her brother had the chance to spend quality time with their parents, as well as have a break from the responsibilities of caring for a new born. During the weekend Emily had the chance to relax and have fun and this allowed her to be able to open up and speak to her parents about how she was feeling about her experiences in school and how she feels about her disability.

Spending quality relaxation time with her parents allowed Emily the time and space she needed to discuss her feelings. This also helped her parents to understand Emily better and foster better relationships within the family.

Martin is 6 years old and has Spina Bifida and Hydrocephalus and is a wheelchair user. Martin has been known to the project since August 2015, he attended the conference at Crieff Hydro with his mum and dad and his 7 year old brother.

Due to his disabilities, Martin finds social situations challenging. At the weekend conference he had the chance to attend the Big Country Kids Club where he had the opportunity to play with children of varying ages, some with disabilities and some mainstream children. Martin and his brother enjoyed having the opportunity to play together and having fun in a safe, positive, child friendly club. Mum said Martin really looked forward to the Big Country sessions and particularly loved meeting and spending time with the younger children with Spina Bifida and/or Hydrocephalus.

Mum and dad found that the talks given by the various expert speakers deepened their understanding of Martin’s condition. Understanding how Hydrocephalus can affect behaviour helped to explain how Martin presents at times and raised awareness of how his Hydrocephalus could impact on his learning in the future.

Mum said that the talks about how the bowel and bladder works and the long term impact of Spina Bifida on the bowel and bladder helped them to have a more in-depth understanding of the reasons behind doing catheterisation's/bowel washouts. Parents feel the talk from the physiotherapist and learning more about the structure of the spine and the function of various pieces of equipment also supported them to understand the importance of physio exercises and positioning for Martin. This has allowed Martin’s parents to feel better informed, more confident and more able to deal with future changes as Martin continues to grow and develop.
Sarah is aged 8 and has Spina Bifida and Hydrocephalus. Sarah attended the weekend conference with her parents and brother Samuel, aged 6.

Sarah's parents have never had a break from caring and they said they felt the benefit of being able to attend the workshops and talks whilst knowing the children were being well cared for. Mum found it invaluable to meet new families over the weekend and hear their unique stories and share knowledge and experiences and make new friends.

What Spina Bifida Hydrocephalus Scotland has learned

This fund has made a massive difference to our organisation. It allowed us to offer an experience to our families that we would never have been in a position to offer. It’s given us a renewed focus on the importance of respite and carer well being and how to ensure that this is a consistent area of support that we offer.It’s also shown us that these events are very much needed in other areas of the country and we would hope to deliver more of these events families in Scotland who need it most.

Even in a resort as big as Crieff Hydro, it was quite difficult to ensure every family had a room that suited their specific needs. It may have been that a room was too narrow for a wheelchair to fit through, that there was no walk in shower, that there were stairs only leading to the room with no lift or stairlift. Each family had unique considerations in terms of accessibility and toileting but with lots of planning and in conjunction with the venue we were able to find suitable accommodation for each family.

From all of the families that attended our weekend retreat, only one family was known to us as using respite services. A lot of our families identify as being a ‘parent’ more than ‘carer’ so the task for us was really to begin the conversation about carer well being and respite and start families thinking about what it could mean to them. We made sure to hand out lots of information about respite services and how to access them, and we heard from two parent/carers in very different circumstances, who shared their experience about giving themselves permission to access respite, and shared what respite meant to them.

Some changes we would make to a future event would be to build in more free family time over the course of the weekend to allow families to fully benefit from such a unique experience. We would also deliver a different speaking programme, focusing on educational needs, sibling support and anxiety and stress reduction techniques. We had arranged for a mindfulness practitioner to deliver stress reduction strategies but she had to pull out the week prior to the event and we were unable to secure a replacement with such short notice.
Top tips Spina Bifida Hydrocephalus Scotland's top tips for an organisation that wants to run a similar project
Tip 1:
Begin the planning phase as early as possible. We began the initial planning phase around 18 months prior to the event.

There were so many moving parts to the event that we needed plenty of time to think through the best ways to accommodate our families and give them the choice they needed about their weekend. It also allowed the hotel to ensure they had enough room availability to meet all our families’ accessibility needs.
Tip 2:
Ask your beneficiaries what they want from the event. We utilised formal and informal methods when speaking with families about what was important from them, what kind of information would be useful and what they were looking for from a short break.

We were able to use that information to try and find a common ground amongst the requests and it allowed us to build in flexibility for each family to engage with what was most valuable to them.
Tip 3:
Maintain regular contact with your beneficiaries before the event, keeping them updated with changes and providing opportunities for feedback.

Quite a few things changed for us in the lead up to the event, including who was speaking, but by maintaining contact with our beneficiaries we were able to manage expectations of the event and families were able to plan their time better.