Epilepsy & Learning Disability Workshop

Prevalence rates of epilepsy remain high in those with a learning disability compared to those without and epilepsy is a major cause of death among this population.

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

Share your experience and views:

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.

We will be holding a workshop from 10:00-14:00 on 19/10/17 in London (venue TBC).  You can follow updates on the event here

For those who cannot make that, we will also be hosting a FB Live event on 26 October from 8.30pm so you can still feed in your views and knowledge.  You can follow updates and get involved here

Epilepsy & LD Workshops



What do Parent Carers need from the Government to help with employment?

We have been asking parent carers what issues they face with finding or staying in employment.  We have asked What helps and what doesn’t help?  We also asked What would or does make it easier?

Today, we want to look at what parent carers told us they needed from the future Government to help them find or stay in employment.

What do we need from the Government?

What do parent carers need from the Government to help them to find and then stay in employmentEmployment Rights:

  • Cutting hours to , say, 24 per week, or term-time only working etc, ought to be a legal right that they can’t refuse for SEND parents, particularly where the child is severely disabled
  • Stronger rights for parent carers, to bring in line with carers of those over 18, including the right to work. Short breaks regulations should be amended to support parent carers to work.
  • To make it easier and more ethical to employ parents in good jobs but with flexible hours.
  • more support with flexible working hours
  • Employers should be incentivised to provide flexible working … creating good conditions will encourage long term staff retention.
  • Employers who are understanding to the needs of parent carers and are incentivised to take them on
  • they need to raise the limit on how much we can earn before claiming carers allowance
  • To listen to the overwhelmingly similar experiences of carers everywhere and incentivise employers to make work/life balance more achievable.


  • Ensure schools and Local Authorities adhere to legislation – don’t leave that down to the parents.

This was mentioned time and time again, both in our survey and in our web chats.

So many parent carers were angry at how much time they spent having to ensure the school or LA did what they are supposed to do. Spending hours on soul -destroying and spirit-crushing battles.  What happened to co-production and working together?

So many parent carers were angry that they found it necessary to take courses on SEND legislation, time they would much rather be spending with their children.

So many parent carers were angry that the complaints system was long winded, confusing and not easy to navigate.  They felt it was designed to put parents off.

We asked if parent carers could request just one thing of the new Government, what would it be?  The majority said this.  The Government to ensure that schools and Local Authorities are held accountable, comply with legislation, time lines, their duty of care, etc in a timely fashion (not an end of year review) and let the parents spend that additional time to be mum or dad.

The impact this has on a parent carer’s mental health and the consequential impact on our children’s emotional health and well-being is huge.

Childcare/Short Breaks

  • Clear guidance for local authorities on their childcare sufficiency duties and sharing best practice.
  • Respite services, carers respite budget. Services are being cut or shut down so there is no where to go to help for funding to provide it.
  • Support for someone else who can lol after our autistic kids beyond family
  • Available childcare for children with disabilities
  • There needs to be affordable SEN child care for all ages, a lot of child care stops at age 11 and there are little or no other options especially for single parents
  • Better childcare and financial support
  • When the kids were small the cost of preschool childcare was crippling.. we had 3 preschoolers and one school aged for a couple of years. Working has been great for my mental health… if my kids had had  complex health needs I would have struggled to stay in work but leaving would have been at  difficult financially and mentally.
  • Childcare to be made available for sen children at an affordable cost with the correct support in place
  • More funding to help in holidays. We qualifybfor short breaks but it equates to 1 week a yeaf to help with holidays as places are limited to meet need.
  • better holiday provision of holiday clubs for children with complex needs. Our son is medically healthy but has severe physical and learning disabilities. Most clubs aren’t available to him as there are stairs or no changing facilities or it’s just totally inappropriate. He can’t do football club for example;) I know it’s expensive but it isn’t impossible.
  • Please accept nannies Cost as childcare cost and help us with it as you do with registered ones . That is because the registered ones are not accepting my son
  • A right to free or subsidised qualified one to one child care….. childminders are not suitable for my child. She needs one to one care.
  • Help with decent childcare of my choice, I can’t find a registered nanny so pay a private one. I get no help towards this.


  • Increase the threshold of Carers Allowance to enable Carers to work more hours/earn more without losing the benefit.
  • Recognition in economic terms of the added value that families bring to a disabled persons life, and a reduction in complexity/bureaucracy – juggling a job with caring is not likely to prolong my life!
  • When a diagnosis is reached an allowance like child benefit without so many forms to fill in.


  • Amend the guidance on home to school transport to ensure local authorities provide flexibility for school buses to collect/drop off children from child care settings as well as the registered home address.
  • After school clubs for older children
  • Help with transport when daughter won’t do taxis or buses
  • A better funded education system that we can rely on.
  • Schools that can cope with non-compliant autistic children


  • More consideration of the effort and time for parents to get a Dx and and EHCP, and the impact this has on working parents’ ability to stay in full-time work. There has to be a simpler way for parents to get all of the assessments completed e.g. assessment days where you go to one place and all the professionals assess your child, then discuss their findings together to determine Dx. This would be much more effective that months of different appointments and reports, which the parent then needs to share with each professional.
  • Less paperwork to fill in in order to keep on top of my son’s health, social care, education and benefit needs
  • Stop taking things away
  • A complete overhaul for the support of parents with disabled/SEN needs as what is in place is insufficient
  • Genuine and meaningful support from the LA.
  • funding and understanding from social services, education and health instead of me fighting all the time for years to get the services I need for my child.
  • Better understanding and support across education and social care


A Final Request:

We need the next Government (and the one after that and the one after that) to support in every way possible, changes within all of society, led by disabled people first, and their families and other allies.

Over to you

These were the comments from our web chats and surveys but maybe you didn’t hear of them or were unable to join in.  Is there something missing from our list?  Something you need from our Government to help you to find and then stay in employment?  Comment below.  We are ensuring that these results reach every possible party member before June.  Let them know what will help them to gain your vote.


Employment as a parent carer, what would make it easier?

Last month we ran a survey and some web chats asking families about the issues they have around finding or staying in employment.

Last week, we shared with you the things people said were in place to stay in work and what makes it hard to keep working.

This week, we want to share what other things make it easier and what people said they needed from an employer.

What do you need from your employer to make it easier?

Flexi working

  • The ability to work from and office (Flexi Working)
  • The ability to manage and make up my own hours
  • The ability to work as and when according to famiky demands
  • Part time options.
  • Term time working options
  • Flexi time
  • Flexible hours. Reduced hours.
  • A bit more flexibility

I managed well for the last 5 and 1/2 years working 30 hours a week. Now having to do 37 hours a week is unmanageable and I may lose my job

What would make it easier as a parent carer

Flexible working hours. My last employer said they did flexible working but when I asked for it I was turned down.

  • Understanding and time off for my child’s appointments
  • More flexibility to work at home when I need to.
  • Flexibility for appointments
  • Flexibility
    Flexible hrs
  • Work 9 to 2. Flexible working hours and paid leave
  • Option to work from home when necessary
  • Flexibility in terms of what days I work and also what hours of the day the work gets done.
  • To allow unpaid leave for my son appointments or when I struggle with childcare
  • a contract of 1 or 2 set days per week would be better
  • Flexible working hours, reduced hours.

Understanding and Trust

  • Time to talk, care and compassion towards carers.
  • less stress
  • Understanding of situation
  • Back up
  • Understanding

My employer fully supports the ‘family comes first’ approach – as does the whole team and it’s invaluable

  • No backlash for time off
  • Understanding and empathy.
  • Understanding that sometimes i need to leave short notice
  • Nothing, other than flexibility and understanding. You just can’t be in two places at once. There is no magic solution in the workplace
  • Support if I’m late to work I can make my hours up etc.
  • Trust that I will do the work required, not necessarily in conventional working hours.
  • flexibility and trust
  • No sarcastic comments regarding being a part time worker

Diversity Monitoring:

  • When recruiting employees, employers should ask whether applicants are parent carers in their diversity monitoring forms, and assess their performance in recruiting, supporting and retaining this group.

Practical Support

  • Hard one to say – possible some type of benefit where SEN parents can access the advice of a SEN advisor / counsellor when needed
  • Employers to help when Local Authorities abuse their time scales (almost like a third party mediator).  When they don’t comply – it has a knock on affect (a ripple in the pond).  The impact on all, has a wider impact! Not just family but employers and productivity of staff (stressors) the whole [cost benefit analysis] needs to be taken into account, and perhaps employers can act as a mediator to facilitate firm boundaries against LA’s so their employees don’t suffer causing employers to suffer!

What other things would make it easier?

Respite/Short Breaks:

  • More respite care than just the statutory 80 hrs per year.
  • We need much better holiday playschemes with provided transport
  • If the local authority actually met it’s child care sufficiency duties, and ensured there was sufficient provision for disabled children up to 18. Our son can only attend a holiday club one day a week.

School and Transport

  • If local authorities would provide transport home following after school clubs. My son cannot access these as we are unable to collect him from his special school which is an hour’s drive away, and meet the needs of our other child.
  • Help with transport for school due to child’s flexible hours at school.
  • More flexibilty from cahms to do things at different places eg go into school rather than having to go there
  • School being a hit more on the ball and the reintroduction of my SISS support
  • More support in school as some days I have to take calls from my daughter several times whilst working
  • school to stop causing problems and start solving them


  • Childminders who do not mind taking children with special needs.
  • A PA brokerage service. We are allocated 15hrs direct payments for school holidays, but struggle to find PAs so are still left with no support when needed. Local agencies either have no one suitable or do not cover our area.
    Childcare almost is harder the older they get
  • Availability of childcare for older children with special needs
    More understanding from the education system! More appropriate education so that our children can be happier at school.
  • If the gov accept treating non registered providers to be a source of childcare for child tax purposes . I nearly pay all my salary for childcare
  • Available and affordable one to one childcare or a support worker from social services
  • Having regular, reliable, specialist childcare


  • An all-embracing change in the whole of society, led by disabled people and their allies
  • People to start understanding that a child with a disability will affect you for the rest of your life!
  • Better rights for carers

SEN Parent Coach:

A SEN parent coach who is able to guide you on what is needed for both school and EHCP, based on an understanding of my son’s needs. This would be of enormous help, as I currently spend a huge amount of time researching this for myself and trying to find best practice examples for things I have not come across before.

Next week

We will be sharing the things carers said they need from the Government in order for them to find and stay in employment.  You won’t want to miss that, as the General Election looms ever closer.

Employment as a parent Carer – what helps/doesn’t help

In March we ran a quick survey and a few webchats to find out about the issues carers face around finding employment and staying in employment.

Over the next few weeks, we will share some of the feedback we received.  A huge thanks to all who took their time to share their experiences with us.  We will also be sharing what your rights are as a carer and the things you can ask for.

What is in place to help you to stay in work?

We asked parent/carers who were in employment, what was in place to help them stay in work.

What helps with employment as a carerWe had some really supportive employers – showing us what can be done when people are inclined to help.

Flexible working

    • Support from my professional body.
    • Professional/ Specialist support e.g. SALT, OT etc.
    • Family, wrap around care at school and holiday clubs.
      • Agreement that I don’t need to take leave to attend meetings about my son.
      • Work a 4 day week. (34 hours over 4 days). Flexible about letting me swap days for SEND-related (educational/medical) appointments.
      • I work from home on a Friday, and have a nanny who helps with before and after school care.
      • Employer being flexible with me, school paying for the lifts we can’t do.
      • I work part time and school day hours.
      • Very part time hours in evenings, virtual learning environment means I can login to almost everything from home.
      • flexible working hours
      • A very flexible working week with the ability to work from home
      • Working from home
      • I work part time. I do annualised hours so basically I can work more hours during school terms and work less hours during the school holidays.  I have worked for the NHS for over 10 years consecutively  so I’ve had the advantage of very generous annual leave (8 weeks)  on occasions when I’ve had to stay home with a poorly child I’ve been able to do some admin work from home. My manager supports me. Other colleagues are parents too so there is understanding. My husband works for himself so he is usually able to help out with kids taking ill unexpectedly for the odd day or two
      • Part time hours and the fact that my husband is self employed and able to be flexible to do school runs and appointments etc.
      • Working part-time
      • Flexible working hours
      • Decided to study at home so can be there for my son who misses lots of school
      • my work allow me as much time off unpaid for all hospital appointments, they also give me my shifts to suits the  kids
      • Flexible working from work to get to all appointments
      • My husband and I both work part time which helps and we have an after school nanny.
      • They accepted changing my contract to lower hours.
      • casual nature of employment…. I work when I can and not when I can’t
      • Flexible hours, understanding colleagues, supportive husband and parents who juggle own work to help when needed
      • Flexiable working. I am required to work 37 hours a week, but I can work hours that fit around my family, work from home and have up to 2 days flexi leave. Also some of my colleagues work compressed hours.
      • Great boss and part time flexible working from home. Work for a dutch company, UK ones less supportive.
    • Finance:

      • Tax credits
      • Direct payments to employ PAs for my son.
      • PA support and benefits for disabled person/child.
      • Benefits and charitable funds
      • A very lengthy and costly battle for a residential school package. Childs wellbeing was the driving force for this not wanting to work
    • Understanding and Support:

      • Very understanding direct boss.
      • Understanding that I am not expected to work evenings and weekends if I’m unable to due to caring responsibilities.
      •  Support from other parents and friends

What makes it hard to keep working?

Exhaustion and Stress:

  • My wife and I are both constantly extremely tired because when I’m at work she’s on her own with the children one of whom is severely autistic, then when I come home I don’t get much rest either to speak of. Performance at work has been affected, have had not that great performance appraisals, have felt like the “weakest link” in my team due to being too tired to do fast-changing mentally demanding work effectively
  • I have to get up at 4.45 to drive 35 miles to work to get there for 7am.
  • Having appointment and needing time off work. Lack of support and understanding from co workers and employers.
  • Lack of flexibility and care for me. When I’m exhausted compared to my co workers I’m truly exhausted. I have a battle just to get to work.
  • The demands of my child
  • The fact that I am juggling commitments all the time

many of my “days off” don’t feel like “days off”… 

  • Stress
  • Tiredness
  • Can’t be reliable, find stress of raising a child with additional needs uses all my time and energy

Sickness, number of meetings

  • It’s always the inflexibility or sickness of child.
  • The number of meetings with social services and the SEN team.
  • NHS not being flexible with appointments for a working parent.

So many hospital appointments.

  • Child who is ill a lot
  • Appointments
  • Kids sent home from school
  • meetings and appointments
  • Sickness, having to make emergency plans, trying to get appointments not in the middle of the day to make work easier.
  • Children’s continuous appts, both my children are disabled. Lots of sick days with the children and exhaustion from trying to parent and work full time. My work is not very supportive. I work for the NHS!

School issues:

  • No part time options or term time working options in my current role, although I have been told if I make a formal proposal it would be considered.
  • School not dealing with toilet issues
  • Not being able to communicate with staff because he is wrap around.

Staff not understanding his condition or how it effects my son

  • son only being in school 4 hrs a day
  • Reflux. Child would be sent home from school unecessarily. School began to fail the child forcing us to look for alternatives.
  • Daughter does limited, unpredictable and fluctuating hours in school & needs a lot of care so very little mental & physical energy to carve time out to work.
  • Unexpected issues with school

Childcare, PAs

  • Childcare
  • Lack of Child care for older SEN children

Childcare for children with special needs is difficult or impossible to find.

  • Finding the right PAs locally and managing their recruitment/training/retention, which is like running a small business in itself.
  • No childcare for Sen child
  • no childcare for a boy with suspected asd/pda behavioural issues
  • If our Nanny is ill. Or if our child with additional needs is ill. Lack of provision for school holiday playscheme for children with disabilities.
  • I can not find childcare for my son. Childcare available only with non ofstead providers that are extremely expensive. £14 an hour.

The other stuff no one considers:

  • Difficulty in managing household tasks while working full time, especially as these need to be done while my son is at school due to his sensory sensitivities.
  • Trying to fit everything in, especially when we were trying to get a Dx and had multiple assessments to attend in order to get the Dx and an EHCP. Looking ahead, trying to work with the school to ensure my son’s needs are understood and met (they change over time). Also preparing for the EHCP annual review to ensure that it accurately states the right provisioning. All of this takes time.

Challenges of staying up to date with essential skills/practises/procedures both in relation to my profession and also in relation to the rights and services/provision to meet the needs of disabled people and their families.

  • Medical-model systems/structures/services/attitudes, segregated provision, isolation.
  • At work they don’t always allow parental unpaid leave . The policy say that they do in my company but they push me to take it from my annual leave
  • When the kids need me but i cant afford to take yet another day off
  • other collegues complain about the amount of time off i need and why i only do certain shifts

Next week, we will be looking at what would make it easier and why going self employed is the only option for many carers.

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What are the challenges facing working parents of children with SEND?

So often, we meet families who tell us that finding employment seems like the biggest challenge there is.  Either the hours don’t work, there is little flexibility or we can’t find the child care we need.  Being a working parent is possibly one of the biggest challenges many of us face.

We are doing some work to look at the challenges facing parents who are in employment and parents who would like to find employment.  We want to know, from you, what works and what doesn’t.

Working ParentsParents in Employment

Are you employed?  Maybe you’ve decided to be self-employed.

What works for you?  What makes it easier to stay in employment?  What would make it easier for you to stay working?  What are the challenges you face, what makes it more difficult?  Could those challenges be overcome by an employer?  Could those difficulties be overcome by support from the Government?  Why did you choose to be self-employed?  How do you make being a working parent work?

If you are in employment, perhaps you have a few tips, ideas or experiences to share with families who are trying to find employment

Working parents - looking for a jobParents who would like to find employment?

Would you like to find employment but it’s proving a challenge?  Do you keep putting it off as you don’t have the emotional or physical capacity at the moment to face rejection?  Do you think you perhaps don’t have the skills anymore after being out of work for so long?  Do you worry about who would be there for your child if there was an incident?

What stops you from being in employment?  What do you need to happen to help you become a working parent?

How to share your thoughts and views

We are giving you two different ways to get involved.  We know no one method works for everyone but hopefully having a choice will help.  Your views and knowledge are so important, they could really help another family.  They could also help to inform the Government about the changes that need to be made.

Facebook Live:

We will be running two Facebook Live chats.  One for parents who are in employment and one for those who are not but would like to be.

If you click on the images below, it will take you through to the Facebook events so you can register interest and be reminded that they are about to happen.

Survey time:

Some of us love them, some of us hate them.  As parents ourselves, we know how often surveys land in our laps.  However, we know that our Facebook Live Chats may not be at a time that works for you but we still want to know what your views are.

We promise that any top tips and advice will be shared with you.
Create your own user feedback survey

If you prefer to go direct to the site to complete the survey (sometimes easier on your phone) then click here

We really hope you can join us or have five minutes to share your views via the survey.  Your views are so important to us and other families may really benefit from your experiences.