Epilepsy & Learning Disability – What’s Working / Not Working

Over the last few months we have held a few workshops – some face to face and some via FB Live chats – to ask families about their experiences of life with a child with a Learning Disability and Epilepsy.

Today we want to share what families believe is working in their area and also what is not working.

Later this week, we will be looking at what needs to be done (the recommendations from families), along with why this should be funded and how it could be funded.

What’s Working?

• Our epilepsy nurse specialist now gives all new parents our group info and we have fundraised to give new families info and a epilepsy teddy for their children and a shoulder to lean on.
• I’ve set up a local parent and carer support group. We all support each other and share our tips and experiences etc. So at least there’s someone there if your having a bad day.
• A closed Facebook group that I post to most days but we meet up once a month for coffee too. People can be as involved as much or as little as they want to. ( we are now linked to young epilepsy for extra support) x
• Our group is for sharing experiences and sometimes in the early hours after watching your child having a seizure there’s someone to talk to instantly that knows how your feeling
• A support group is great, but that needs to be the icing on the cake. In some areas, people aren’t even getting the ingredients to make the cake first
• Consultant was very thorough and have us lots of time to ask questions about anything. Still does. When we had to challenge the school on exclusions due to epilepsy he was on our side. He helped us. The school needed educating!
• I am a member of Swan as Undiagnosed, the group has been a font of info. I also contacted Young Epilepsy direct.
• Paediatric services and testing
• Neurology in my area
• Using Apps for records for the young person to do themselves or with support to use in hospital reviews
• Co-ordination good after diagnosis
• Multi disciplinary approach in the treatment plan
• Allowed to research drugs before being prescribed and honesty from consultants around side effects. – this relies on parent’s capacity/background/education  to do this
• Full involvement of individual and family
• Annual neurology appointment with report from Epilepsy nurse
• Parents were confident at times and some were anxious around the care
• GP Annual health checks when done
• Nurse review every two months
• Co-ordinator role important
• Positive risk assessment
• Epilepsy training for school staff

What’s Not Working?

• Our LD diagnosis was given via letter when GDD until 5 suddenly turned to LD. There was no support at all. Worse than epilepsy!
• I carry the ‘folder of everything’ when away from home so key elements of medical history are with us as got fed up with time wasting as they tried to find patient records.
• A slight aside but there is zero support for siblings who witness seizures. Dropping your child to school knowing they are so upset is awful
• my daughter is ten and has seen her brother having seizures all of her life. She’s under our local cahms now but has been offered no support x
• They need to explain in a simple way because for some parents the language that health professionals isn’t the language parents use
• There is so much time wasting in the system as we don’t know who to speak to. There will be a financial case if they track through the benefits of having a first port of call to make sure we are not time wasting.
• We had to challenge the school on exclusions due to epilepsy, doc was on our side. He helped us. The school needed educating
• Lots of charities have advice lines. I’ve spoke to them loads. Epilepsy actions a good one
• Sleep with my nose pressed to a video monitor, and have an epilepsy mat. Even the slightest illness has me sleeping on her floor with one eye open
• we had support staff insisting that all challenging behaviour was down to him being ‘pre seizure’ – no, they were just getting it wrong. It’s an easy way to blame the victim.
• Video evidence is so important. I would never remember what my daughter does in seizures. Our neuro was able to prescribe different meds based on seeing different seizures
• it’s difficult because there is no test, even an EEG can be inconclusive. History and evidence are used for diagnosis, and if you’re not believed, no diagnosis. Videoing a seizure is the last thing on your mind if your child has stopped breathing
• The advise from our neurologist was to film the seizure THEn phone the ambulance
• There seems to be a culture in NHS, that parents have to prove themselves to be reliable. It should be the other way round.
• learning difficulties always first as my son can’t explain how he’s feeling . So may have had a seizure but can’t explain it.
• a child may have seen a neurologist then say 2 month later the child could have had 20/30/100 seizures …. its not good enough to go between appointment to appointment with no help and support
• We were in a complete spin, just accepted everything that we were told and were too scared not too. I challenge / question much more now!
• Some ‘professionals’ just accept that epilepsy and seizures are inevitable. They develop a tolerance and expectations are minimal. I’ve had to be very proactive to change meds – quality of life…
• as soon as he was diagnosed with autism too all support stopped!!!
• No support from the learning disability team. They said I’d be given a social worker but 6 years later we’re still waiting.
• we are finding girls in particular are really struggling to get a diagnosis and we truly think it is because girls coming to an age of puberty and the fact that Epilepsy medicines do have an affect during pregnancy.
• if they are just having abscenses they are not as life threatening and Ive found as a parent now going through this, they want to rule out blood levels, type of diet, then you have to wait on appointments and they take months
• Wasn’t listened to by the Neurologist. Even with my knowledge of EPilepsy that I explained to him he was still dismissive. It wasn’t until I made an official complaint to the Head of the Health Trust that they got my daughter in for an EEG!!!
• Neurologists have told us that there is a blame culture with regards to epilepsy medicines
• Epilepsy nurses are very limited and there is not a lot of them.  Had epilepsy for 20 plus years…never seen an epilepsy nurse
• Neurologists are very reluctant to just hand out Epilepsy medicines unless they really have to
• We were never offered an epilepsy nurse either but could contact the Neurologist whenever we wanted.
• Compared to years ago, getting a diagnosis now takes a lot longer
• ‪We are finding that our consultant doesn’t always like to contact his peers for help and advice.
• Neurologist loathe to reduce / alter meds even with son having big side effect of tremor in hand
• Most parents sigh with relief when Baby reaches 1 and cot death risks reduce massively. We live with a higher risk for life and yet it doesn’t get anywhere near the profile or support
• When the start point is not being believed until we provided video evidence of a seizure, there is no basis for trust.
• Total disconnect! The advice from A&E was disputed by the neurologist and then the community paed gave difference advice again. GP wouldn’t touch us other than repeat prescriptions.
• We had very little support. Post diagnosis we were sent away with meds’ but no pointers of where to get support.
• My daughter had to wait 9 months for an appointment with the neurologist
• I’ve never had SUDEP explained by a professional. It’s so scary.
• My son’s neurologist is very conservative with meds, and has explained why – there are limited options and although sometimes it’s trial and error as to which one suits, over a lifetime you could end up running out of options. I then focus his attention on quality of life and the dangers of SUDEP. He does listen, reluctantly
• Consultant is in one area and GP is in another …there is a disconnect I have to chase up all departments to keep things on track.
• My sons epilepsy has never stopped in 14yrs but he’s waking round like a zombie half of the time due to meds. Yet I think people assume it’s part of his learning difficulties. I would love one day to see my son as he really is
• We were questioned for months and eventually got an EEG which showed continuous seizure activity.
• Delayed diagnosis when there are other health issues or syndromes
• Misdiagnosis due to other health needs, non-verbal communication and learning disabilities
• Initial tests took long as child unable to take part in usual testing – sometimes general anaesthetic required.
• Little literature available on the condition for parent carers
• Lack of local neurologists and long waiting times for diagnosis
• Child has little understanding of their own condition and would express discomfort by crying, being uncomfortable, short phrases
• Little information available for young people
• School unware of epilepsy and most of it deemed to be behavioural
• Epilepsy has been a barrier and the more of a major issue than the LD and took over everything
• Side effects of medication not discussed
• Differing levels of onward referrals
• Side effects of medication and relying on parents to explain behaviours
• Difficulty in tolerating the tests for a young person with LD
• No plan if seizures continued or what to do after a seizure occurs
• Lack of access to notes
• Role of community paediatrician being reduced
• Not offered EEG test
• Cost between forms of medication is an issue and prescribing cheaper versions
• Told what to do and not listened to
• Escort will not administer medication on school transport and this is becoming more of an issue
• No training for parents and carers on administering medication including Buccalmidazolm even though it is written into the care plan
• Parents feedback that some did not have any care plans at all, and all the information is in their heads.
• Overmedication often results from difficulties between co-ordinating health needs of someone with complex health needs, eg mental health and LD and epilepsy.
• Psychiatrists not listening.
• Medication can impact ability to participate in activities – side effects
  • Eg can’t play football incase of injury to head
• No emergency epilepsy contact available after 5pm or on weekends  Northern Ireland
• Risk assessment needed for activities due to discrimination eg swimming as young person may need a life guard to be with them.
• Generic approach to 999 calls instead of person centred.
• Longer waits at hospitals AnE as will have to liaise with specialist hospitals
• Never see GP ,or only for referrals, GP cruicial in adult services and annual health checks.
  Isolation to families
• Little support from GPs regarding epilepsy and signposting elsewhere
• Stigma and ignorance around epilepsy
• Mental health and challenging behaviour leading to communication and emotional episodes due to the seizures.

As you can see, there is lots going wrong but most of this is fixable.  Not all of the fixes involve money, they merely  involve listening to families, working together and better communication.

Don’t forget to check back in later this week as we share the recommendations from families, along with why these changes need to happen and how they could be funded.

Debs Aspland

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