Lighthouse Short Breaks Service
A story by Epilepsy Scotland
The service delivers a dedicated short break service to young people aged between 5 and 20 years old affected by epilepsy combined with profound and multiple disabilities, and their carers.
Support hours are offered to the young person and parent/carer, and it’s entirely their decision how regularly they would like to use this allowance. Many families have expressed a preference for a little and often, this means a regular and reliable respite from the caring role but also an opportunity for the young person to routinely attend a group or take part in an activity.
Through our experience of working with these families, we discovered that the young people who are cared for, preferred to use their support time to access social groups and activities.
Tip 1:Do your research – identify the need, how your service meets that need and how can you demonstrate the difference you’ve made.
Tip 2:Be user led – let those who need a service, mold it. Listen and encourage their input.
Tip 3:Keep an open mind – sometimes feedback and evaluation isn’t formally noted. Record as much you can, it may help to report.
During feedback, one parent told us “The service gives our son the chance to experience an element of independence with appropriate support”.
One of our most successful short breaks involved two young boys, who have continued to strengthen their friendship using their short breaks support packages. They were given the opportunity to go away together and decided to go camping near Falkirk, and see the Falkirk Wheel. They were involved in all stages of the planning, from choosing a safe location and risk assessing the trip, to buying supplies and learning about map reading. At the campsite the boys learnt about building fires and setting up a tent, which neither had done before.
JP deals with regular seizures and is cared for by her mother, who has a learning disability. JP’s mother said that she was very concerned that JP would never really excel, because they were both so reliant on each other. Both mother and daughter have difficulties understanding medical professionals and filling in forms so our worker did everything she could to alleviate some of these issues. With JP, they organized an epilepsy review, so the worker could explain which medications JP needed to take and showed her how to measure her own medication into daily pill boxes, so that she can now self-medicate. JP was also interested in starting college, so she visited different campuses with her worker until she found a ‘living skills’ course, which she is now attending independently. Her mother said that this was the first time JP had regularly had reason to get dressed and leave the house, in years.
During our ongoing feedback, carers continuously tell us that they feel the service is of a very high quality, which means that during their period of respite they can truly relax and take time away from the caring role without underlying anxiety about their child.
Service user KO is supported by his mother and father but also by his grandmother. Due to our support, it is no longer necessary for her to travel a long distance to meet KO off the school bus on the days that his parents are unable to get home in time. This was highly beneficial to the grandmother’s health as it was a stressful and physically exhausting task for her. Many of our service users rely on additional family members or friends to help them through trickier days.
Our service removes the need to rely on these family members, which in turn avoids straining these relationships/friendships and sometimes health.
One parent has been using the short breaks service almost like a sitting service, to allow her to attend evening classes. She hopes to start taking care of some basic book-keeping from home, so that it does not interfere with her caring role too much. It has been a struggle, and some evenings she really does not feel like she has the energy but she has stayed dedicated and is making progress. She knows that being able to work again and bring in some money to the household would give her a real sense of achievement. Any extra money that she can muster would directly benefit her daughter of course.
A parent told us
“The pressure of dealing with our child is unbearable without a break”.
Carers can lose a sense of self, and feel guilty for becoming a ‘carer’ and neglecting the person who they are, away from caring. We encourage parents and carers to use their period of respite to reconnect with activities that are important to them, whether that be spending time with other family, regular activities such as clubs/groups, although we understand that sometimes just having a rest can be equally rejuvenating.
One 21 year old service user has been left with a severe acquired brain injury as a result of uncontrolled seizures. She envies her younger sister who has left the home and now lives independently studying at college. In her mind, she should be doing all those things too, but would never manage alone because her mental processing speed is so slow. Using her short breaks hours, we have supporting her to meet with a housing association and social worker who can provide her with a flat to call her own, and the support staff she will need to keep safe. Not only will this move relieve her parents of their arduous caring role, but her new support team will have the time and skills to promote her independence, by giving her the time and space that her family simply can’t afford.
Simple though it sounds, it’s the small things we desperately miss when we no longer have the time, according to the majority of our service users. The seemingly benign act of grocery shopping is something that one of our carers spends her short breaks time doing, without her young autistic son. She has reported numerous accounts of tantrum-like behaviour and difficulties taking him out in public, when she needs to focus on him, and the task at hand. Knowing that he is safe at home, and entertained by his worker, means that she can take a stress-free walk around the store, with absolutely no demands on her time. She describes this as a simple luxury, when living as a full time carer.
A young service user called DG has nocturnal seizures, which cause him to cry out in distress and may require rescue medication to stop the seizure. Both DG’s mum and dad feel that they sometimes walk around during the day in a daze, because their sleep pattern is so interrupted. They have two older sons who they describe as being neglected (because they are independent) so get left to their own devices the majority of the time. This upsets DG’s mum greatly, so she uses the short breaks time to schedule quality time with her older children.
The H family have two disabled children, one of whom is supported by the short breaks scheme. The siblings are very different and argue constantly so they family asked us to take our service user out to lunch on a Saturday, so that the rest of the family can dine in peace. Mr H reports that some weeks this is the only meal of its kind, where no one ends up in tears. They are grateful for the short period of calm, where they can give their daughter more attention and try to help her understand her brother’s antagonistic ways. The H family also went to America recently, leaving their son with his grandmother. We were then able to allow the grandmother some respite during that 2 week period, which she used to catch up on her soaps, a small thing that meant a lot to her.
One family used our caravan to its full potential this summer, taking a full week in August. They had access to all the activities and events held by the park and were still able to utilise their support worker, so that the family were not the sole carers responsible for their disabled daughter, RH. RH was extremely excited about this holiday - the first she has enjoyed in over 2 years – and her family loved seeing her mood lift in the weeks preceding the trip. She was able to leave the park with her worker to access activities in the city to give her parents a rest, and catch some of the Edinburgh Fringe Festival shows, which illuminate the city in August.
We liaised with organisations to ensure the young people who use our service are able to integrate and engage in specialised and mainstream services. We’ve successfully set up one service user with a college course, where she can mingle and learn with like-minded people of a similar capability.
One girl attends a judo class, another a music jamming group. One boy started using his support to access football group, open to all, because he needed help dealing with social situations. He then used further short breaks funding to have that worker take him to a football camp in Geneva.
We worked with the Scouts Special Needs Officer to have one of our service users enrolled in Scouts. He has progressed to a stage where he can attend his group unsupported, because he feels confident and safe, surrounded by his new friends. The Scouts Special Needs Officer ensured appropriate training and awareness was in place and is now more epilepsy informed.
The short breaks evaluation tool kit has been invaluable and is so versatile. (We have started using this to evaluate other services too). In some cases flip chart paper has been our friend, and we have sat on the floor with our service users drawing pictures of hope and dreams, which we can reign in to formulate potential activities.
Scoring mood before and after activities allows us to make sure the activity is having a positive impact. We also utilise tests such as mental health questionnaires to gain snapshots of how our service users are feeling. We still find that nothing beats talking to the family, as often as possible but particularly at the start and end of a shift, when people talk freely and issues become quickly apparent.
We continue to use our feedback questionaire's for staff and service recipients.
1. Co-ordinator meets with family to discuss the service and get a feel for how we can be of use and if the service fits with their needs
2. Co-ordinator introduces an appropriate worker(s)
3. Worker has an informal short shift, to simply spend time getting to know the service user, together coming up with a list of possible activities/goals. Often a parent/carer is present and will be able to give us lot of direction and suggestions
4. Worker can then design or choose feedback tools to build on the last meeting and look up further activities. This is an on-going process throughout.
5. A shift pattern is determined (if the family wants structured, regular support)
6. Worker will continue to monitor the service’s success using smiley/sad face activities, questionnaires, talking to family members, contacting school if necessary for advice, using the evaluation tree, or noting body language/changes in mood etc.
During initial meetings with families, they are made aware that the service is funded, and when the funding is due to end. During the period of support we keep families up to date about the funding, always discussing how end of service would affect them.
We have 5 service users who have used the short breaks service to ‘test the water’. They have found the support so beneficial that they have approached social services to have a full needs assessment carried out, in the hope that they could start to receive some permanent funding to secure our services in the longer term. One family chose to pay privately, using their own funds, because they have been unsuccessful in their council application but felt the support was simply essential.
We also provide a factsheet about the service.
Another service user wants to be a rock star when he grows up and he told us about this while sitting on bus with his worker. While this is unlikely, we can support him to a music group every week, where he can jam with other teens, and be musically creative. He is flourishing in this inspirational environment and has chosen two new instruments to practice at home. His mother is a musician by trade, so she relishes being able to help him practice, both engaging in such a positive activity. It became clear over time that being a rock star, to this service user, meant being in a band, and not necessarily rich and famous. He’s achieved ambition and is full of smiles when we see him.
One benefit we have been aware of is of service users moving their support package to our service as it is tailored, specific and really meets their needs. We encourage these service users to 'free up' their Better Breaks for other families who have no funding/support in place. This, so far, has worked well.
An unanticipated benefit was accessing a funding opportunity for purchase of our static holiday caravan. Our experience and learning of how vital periods of respite are for carers and the cared for enabled us to complete a detailed and compelling funding appeal which was successful.
Referrals are received through our own services but also directly from social workers, who have known of us either from prior experience, or word of mouth. We also reached out to each social work centre, keen to attend their next team meeting and briefly introduce our organization and the services we could provide.
We were taken up on this by three social work centres. Our youth worker attends the seizure clinic every fortnight, meeting new families, who can self-refer if they wish.
Most social work referrals tend to have multiple support needs, to the degree that they require a social worker. We are also grateful to our existing families, who tirelessly spread the word about the work that we do, particularly around the special need schools that their children attend. Additional needs are 18 with epilepsy, 1 acquired brain injury, 1 with PEG feeding equipment, 1 with severe challenging behavior, 2 with Down’s Syndrome.
• Information received during Lighthouse Service Co-ordinator service review with parent/carer
• Telephone survey of parents using closed and open questions
• Face to face feedback from service user and parent/carer to Support Worker
• Support Worker feedback forms given to all those working in the project
• Social work, school, and medical reviews that the Lighthouse Service Co-ordinator attends
• Handover notes from Support Workers and their own experiences during support time
• Short Breaks Evaluation Toolkit materials
• Correspondence with the referrer, e.g. social worker, though-care worker, school, colleagues