Over the last few months, we have held a few workshops with parent carers of children and young people with Epilepsy and a Learning Disability.
Earlier this week, we shared a post showing what parents said was working and not working.
Today we want to share their recommendations about what needs to change, why it needs to change and how it could possibly be funded.
What needs to happen?
- Group meetings with epilepsy nurse, neurologist, Community paed and parents to all agree a plan. Including school nurse if appropriate.
- a national helpline run by epilepsy nurses would be huge, 24 hour number to call as 111 is daunting if you’re just not sure. ‘Is your child blue’ agh! No but they are having weird seizures that no GP will be able to advise
- Introduce Standards across the board:
- Standard 1 the parent / patient is to be believed and concerns taken seriously to avoid delays
- Standard 2 is that information about next steps e.g. EEG, meds, diet etc that can also include how you can help as a parent e.g. filming / recording seizures
- Info from professionals on SUDEP. I think most of us found out from other parents and it is so scary to come across something like that whilst browsing FB
- There also needs to be a system in place when you visit A and E so that they can see all your history. If you visit different hospitals on admission they don’t always have the same details logged on the system
- Ensure that everyone had access to an Epilepsy nurse or equivalent. It is terrifying to be dealing with long or new seizures and have to wait weeks to be seen. We have ended up in A&E to get advice which is crazy!
- Diagnosis within a set period of time. All have a consultant, epilepsy nurse and neurologist who we see at least twice a year. A contract signed by all involved, including the parent agreeing to share all info to the care group, all of the time.
- Clear guidance with regards to prescribing of epilepsy medicines for females
- Diagnosis within 3 months, information on drug therapies, sudep and prognosis. Something positive – it is possible to live ‘normally’ with this condition.
- The 2 strands to this are both vital, i.e support groups and then medical
- Linking up parents in a local area (with consent) so that you meet those further down the road early on.
- Immediate training on resuscitation and giving emergency meds. The school nurse trained us 2 months after they were prescribed….
- Respect for our lived experience – just listen
- GP clinics, similar to asthma etc
- Side effects given proper consideration
- Quicker referral and more ongoing support
- Much improved listening to parents and carers.
- Ability to understand the complexity of presentation of the seizures
- Learning disability definition to be included to give more clarity
- Guidelines needs to empower GPs to define learning disability
- Needs to be good explanation on medication and side effects all
- Professionals in health, social care and education to understand epilepsy and the impact on families.
- More understanding of parent and families emotions and journey
- Information needs to be shared across authorities when accessing services from different regions eg tertiary care given out of area, educated out of area.
- Clear timeframes for EEG and MRI and reviews
- Individualised approach to each person
- Listen to parents and carers
- Devise a plan for child before discharge from hospital
- Videos help to define seizure types
- Life pathways that continue of family life after 18yrs old, issues around consent, family involvement around transition to adult services
- Good epilepsy plans help in adulthood
- Reasonable adjustments needed for appointments with GPs and all health professionals
- Need to listen to parents about triggers to anxiety within a hospital setting
- Creative planners and advocates to really involve someone with learning disability (PMLD) in their own care plan
- Review of new rulings around medication and administration of drugs may have impact on people with LD
- Parents to have information and be supported to feel confident about emergency plans
- Recognition of emotional breakdown on family life and the anxiety placed on parents
- Respite needed to be available for parents and review of local criteria to include epilepsy
- Review of continuing care funding
- Impact on everyday life including access to activities
- Improvement needed in specialist dentistry for people with LD and epilepsy
- Housing and adaptations needs to be set up, equipment, alarms and safe
How is it (and why should it be) funded:
- The 24 hour epilepsy helpine could be funded via the hospital charities fund. All hospitals have it.
- Return on investment would be far fewer visits / queries to the medical professionals or at least the consultants. We were calling every week in the first year!
- Cannot underestimate the impact on parent mental health, there will be huge benefits to supporting parents who don’t then end up in crisis
- less awkward parents demanding services and complaining…
- Quicker diagnosis to get the help and support in place
- the Pharma companies that make the epilepsy medicines should put some money in the pot for Epilepsy
- In my job we meet a lot of medical reps who give us some freebies etc. So instead they could, as suggested donate to a helpline x
- Give all NHS staff a community involvement day and use that to run support groups!
What would you add to this list? Do you have any recommendations about what needs to change and why? Any suggestions on how these changes are funded are also welcome.
Mum to three great kids, each with a different SEN.
Transplanted from the NW to the SE.
Co-founder and Director of Bringing Us Together