Epilepsy and Learning Disability : What needs to change and why?

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….

Epilepsy and LD - what needs to change and why

  • 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.




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

LD and Epilepsy - what's working and not working

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.


Call for Action – Crisis Looming #Budget2017

Six days ago, in the run up to the budget on Wednesday, Isabelle and I went along to the Westminster Forum on “Key Issues for Children’s Services in England – new service models, managing financial pressure and next steps for inspections”.

We went along to represent Bringing Us Together and our family networks across the country and to feedback to you all.

The first two talks by Dr Jo Finch and Councillor Richard Watts gave an honest, albeit sickening, insight into the reality of the present situation and shared statistics clearly showing that children’s services are not working across the country.

The situation is getting increasingly desperate and services are needing to do more with less money and dwindling budgets.  If we keep continuing to punish families for living in poverty it will in fact increase demand long term.

Already 28% of those in poverty in the UK are disabled people (3.9m)and 30% of Britain’s children are now classified as poor (4m).  As if this is not bad enough we know that child poverty is going to increase in the next 5 yrs. 

Crisis Looming - #Budget2017Richard Watts stated that nothing is more important than getting children’s services right for our children.  The £2billion shortfall is not a true reflection for the rise in demand and is just about carrying on what we are doing now.  There are increases in workload with the decrease in budgets.

Families, as we know, are having a really hard time at the moment.   There has been extensive funding spent on different models and ways of working but we remain unconvinced that this is the way forward and that this money would be better spent on early intervention.

Our Children’s Centres are closing, there are more homeless on our streets, families are going hungry and more children going into care.  Richard stated that local sector is the key factor in this rather than more new initiatives.

The core focus should be improving the lives of children locally.

Housing is critical in this and has the biggest impact on families – where we invest is fundamental.  The impact of what is going to hit is enormous and we need to respond.

Pamela Dow from Catch 22 discussed the recruitment and retention of social workers,  another key factor, and we heard from another speaker that the average working expectancy of new social workers is 8yrs.  There was a case study from one LA where people have been trained to work alongside social workers as support staff to take the load of social care and to support the family with signposting, information and advice.

It was evident from the first speakers that we are talking about one of the most important issues of our lifetime across the country.  There is no question about it that we are in a crisis.  Name it for what it is.  Money Matters – allow systems and services to be adequately resourced.  There needs to be an injection of funding into children’s services so we can use resources more effectively.

Several models were discussed later in the morning on where there is good practice and where it is working – Hackney and Leeds were the two examples. Tony Oakman spoke about the work that Dudley have been doing – they were a failing authority and have had to think very differently about their work.   Maria Godfrey talked about how Oxford are working with the 3rd sector and have £1m grants for organisations to develop local services to meet the needs of the community.  This all requires a fundamental cultural change and local communities leading with the involvement of interfaith organisations, families, parents and working in partnership with universal services.  They have seen positive differences whilst being less problem focussed.

The last two talks were given by Emily Whitehead and Julia Yong from the Department for Education.   Their talks were frank – we don’t know how it looks so help us with the evidence of how it should look.

Questions from the floor included a young man from the care system, another parent called Alice McCullen who is involved in Transforming Care and runs an organisation called Child Protection Autistic Child, Pamela Calder from Early Childhood Studies Network, Isabelle and myself.   This has definitely brought awareness of the impact on crisis for parents with children with autism and learning disabilities who are in hospital settings.  Our work with families and mental health & well being was a reminder to those there that we are here for the duration.

Since the meeting I have listened to the discussions on TV and radio in relation to this Autumn’s budget.

Where oh where is the funding for our services?  It is barely mentioned and my heart bleeds at the thought of what is to come and how our children, and our children’s children, are going to be the ones that suffer.

Our families are only just coping and as one mum said on social media she struggles to put food on the table and is only just getting by.  She and millions more like her going to barely survive or will end up standing  in line for the food bank.

We have been told that  “households with one or more disabled member will be significantly more adversely impacted than those with no disabled members.

On average, tax and benefit changes on families with a disabled adult will reduce their income by about £2,500 per year; if the family also includes a disabled child, the impact will be over £5,500 per year. This compares to a reduction of about £1,000 on non-disabled families.  This infographic from Equality and Human Rights Commission is frightening reading.

Where is the solidarity, the campaigning from parent led charities?  Who does not feel the anger, the fury in the injustice and the blatant inequalities facing families?

By not doing anything we are partly responsible for allowing this to happen to our friends, families, and our own disabled children who are growing up in a society unable to care enough to prevent the looming crisis.

Let’s wake up and shake up.


Facebook Live – Epilepsy & LD chat for Parent Carers

We love our Facebook Live chats at Bringing Us Together.  They are such a good way of getting information out to families and also getting feedback quickly.

Facebook Live - Epilepsy & LDTomorrow evening at 9pm, we will be hosting a Facebook Live Chat for parent carers discussing Epilepsy and Learning Disability.

NHS England is looking to provide epilepsy pathway guidance to improve outcomes for those with a learning disability and would therefore appreciate your contribution.

We would like to hear parent carer experiences with the care and management of epilepsy of a family member who also has a learning disability.


What questions will we be asking?

  • Tell us about your experience with the diagnosis.
  • Do you feel confident with treatment plans?
  • How is your loved one and yourself involved in this process?
  • What is your experience of specialist epilepsy services?
  • How do you see the interactions of primary, community and acute care services and management?

Join us:

You can join us live in our Facebook event – FB Live Parent Carer chat – Epilepsy & Learning Disability.

If you have never been involved in a FB Live before, they are super simple.

Go to the events page and about 8.55pm I will start the Live chat to give people chance to join.  This will show as a new post in the event.

Click on the new post and the video live stream will show up.

You can add comments just by typing, like you would add any comment to a post on Facebook.

One question I am asked quite frequently is “can people see me if I am involved?”.  No, they can’t.  So feel free to attend in PJs, with no make up and a mug of tea in hand.  The only person you will be able to see is me.  I promise not to be in PJs (unusually for 9pm).

Oh and a quick heads up to those joining us, I am also mum of three and this is bedtime at our home.  If you suddenly hear me shout “get to bed” or “I won’t tell you again”, it’s not aimed at you.  Honest.

If you can’t join us but would like to share your views and experience, then you can watch it and comment after the event.  Use the link above and watch it at your leisure.

I look forward to chatting to you on Thursday evening



How’s YOUR health?

As a parent carer, we often put ourselves last.  We look after everyone’s needs except our own.  We often don’t even tell people we are not feeling well.

We forget what normal is.  Not just with regards to parenting or our child’s needs, we also forget that daily stress is not the norm for most people.


Parent Carer Health questionnaireThroughout the summer, Debs has suffered with ill health and had looked at lots of different aspects of her life to see what could explain this.

Had she changed what she was eating?  Had her sleep patterns changed?

When she eventually posted on social media to share how ill she had been and to ask people for suggestions, she was totally overwhelmed at how many parent carers said “me too, Debs.  This is how I feel right now”.

Debs had forgotten that our norm is not the norm.  She realised that she had had a really stressful few months.

  • Her twins were leaving primary and going to secondary.  Both in different primary schools so two lots of leaving parties, assemblies and plays.  Not that different to some other parents.
  • The usual chaos of end of year awards and sports day.  Again, not that different.
  • Whizzing around between three different schools.  Spread across 50 miles.
  • Her son who is severely visually impaired was moving into a secondary school with no experience (but a real desire to learn), and let’s just say the transition wasn’t as smooth as it could have been.
  • Her eldest son’s school decided to present the idea of moving some of the children into a new unit within a mainstream setting – really unexpectedly.
  • There was a totally unnecessary battle over disability parking (unnecessary as the parties concerned really should have known what the law and their own policy said)
  • Her PA quit with no notice – by text – leaving her with no help over the summer break.
  • There had been a reduction in DLA which was having to be appealed (apparently her son chose to be anxious and refuse to move)
  • New transport had to be organised for the twins.
  • The new school’s SENCO decided to quit within the first few weeks of the school term.

And these are just the edited highlights.

Add to that the general chaos of school holidays, changes to routines and making sure that three children – each with a different SEN and/or Disability – were happy during the holidays.  What did Debs expect?

Parent Carer Health – Have your say

Once Debs started to get many comments and private messages from other parent carers, all sharing similar stories about their health, we wanted to know how prevalent this was.  Was it just that Debs is friends with people who happened to be ill?  Or is it common throughout the parent carer community?

We have launched a questionnaire to find out about parent carers’ health.  We have already received over 800 responses so far.  We know that people who are feeling ill will be more inclined to respond, but we have had responses from parent carers who are well.

This questionnaire takes less than 5 minutes to complete and will stay open to responses until 30 November, 2017.

In January, we will be sharing the results with you and others.

The results we have so far are heart breaking.

  • Parent carers who haven’t asked for help because they are scared of the consequences if they say they need help.
  • Parent carers who asked but either no help was available or the help offered was of no use.
  • Parent carers who believe that their parent carer role may not be responsible for their ill health but is definitely a factor in their ability to recover.
  • Parent carers who are stressed by the Education system, the lack of mental health services (both for them and their child) and finances.
  • Parent carers who have never been offered a Carers Assessment or requested one only to be told they don’t meet the local criteria.

Please take 5 minutes to let us know about your experience.   Just click on the image above or here to go through to the survey

What is Stress?

Stress:  a state of mental or emotional strain or tension resulting from adverse or demanding circumstances

So many parent carers live in an almost constant state of stress.  What impact does that have on our health?

From NHS Choices Website (© NHS Choices)

Stress causes physical changes in the body designed to help you take on threats or difficulties.

You may notice that your heart pounds, your breathing quickens, your muscles tense, and you start to sweat. This is sometimes known as the fight or flight response.

Once the threat or difficulty passes, these physical effects usually fade. But if you’re constantly stressed, your body stays in a state of high alert and you may develop stress-related symptoms.

Symptoms of stress

Stress can affect how you feel emotionally, mentally and physically, and also how you behave.

How you may feel emotionally

  • overwhelmed
  • irritable and “wound up”
  • anxious or fearful
  • lacking in self-esteem

How you may feel mentally

  • racing thoughts
  • constant worrying
  • difficulty concentrating 
  • difficulty making decisions

How you may feel physically

  • headaches
  • muscle tension or pain
  • dizziness
  • sleep problems
  • feeling tired all the time 
  • eating too much or too little