Welcome to the Families and Friends of the Epilepsy Society website

Helping people see a brighter side of life

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We call ourselves the FFES for short. We’re a small charity, registered with the Charity Commission, which has the aim of improving the lives of the people who are supported by the Epilepsy Society, and indeed those staff who support them.

"Thank you for all that you do. We can't get to visit as often as we like on account of where we live. It's so good to hear about what you're doing for residents and staff."

"it's the fellowship that I love. Speaking with other members who just get it. This community that has been developed is simply invaluable."

"Our son has lived here for over a decade, but it’s only since we joined FFES 18 months ago that we’ve really felt part of the community."

News & Events

Find out what’s coming up. This is where we list forthcoming events for residents and staff, our information meetings and social gatherings for FFES members. We also post updates on broader Epilepsy Society news, and news from the wider world of epilepsy, learning disability and social care.

2nd January 2025

Epilepsy Society holds 74th AGM

The 74th Annual General Meeting (AGM) of the Epilepsy Society took place in mid-December. This is an important meeting, as it’s where the charity’s accounts are officially approved, and new Trustees are voted on by voting members, a category of membership which until recently anyone who supports the objects of the charity can apply to become. There are believed to be around 100 voting members of the Epilepsy Society. Around 10 attended the AGM.

Chair of Trustees Kate Alcock gave a brief address to the meeting, highlighting some of the charity’s achievements in the year in question. The Annual Accounts for the year ending 31st March 2024 were then adopted.

Total income for the year was £18.7 million, with expenditure of £20.2 million. Income from care services grew significantly, from £12.2 million to £13.3 million, or 71% of the charity’s entire income. The charity has made good progress reducing its pension fund deficit, but this still accounts for a considerable cost every year, as does the cost of the ongoing planning application.

BBC article

Two new Trustees were confirmed in post, and we wish Sarah Miller and Penny Owen well, and look forward to meeting them. Deborah Wheeler, who many will remember worked tirelessly in her years as a Trustee, especially during the pandemic years, stepped down. All Trustees give their time and expertise voluntarily, and are responsible for defining the overall strategy of the charity.

A number of FFES members are voting members of the Epilepsy Society, having either been invited to join, or applying to join, over the years. It is a cause for concern that new applications have been frozen, with a governance review unlike to report on its findings until next summer, according to the new Company Secretary, Anthony Lumley.

10th December 2024

Professor Ley Sander provides FFES update

Professor Ley Sander is considered to be one of the world’s leading experts on both the diagnosis and treatment of epilepsy. He holds senior positions in various institutions around the world, and has been medical director of the Epilepsy Society since 2012. He is also an elite public speaker.

He has spoken regularly at FFES meetings over the years, which has given us privileged access to the latest trends in epilepsy treatment. Thus we were honoured to welcome Ley to our recent meeting, held online on a Saturday morning. We are immensely grateful to the Professor for his time and his commitment to making life better for people with epilepsy all over the world.

One of Professor Sander’s key messages over the years has been one of realism. He admits that our understanding of the mechanics of the brain and the central nervous system, whilst evolving rapidly, is still in its infancy. There is so much that we do not know about epilepsy, which makes it so frustrating for us all, and such a damaging condition for our loved ones. Epilepsy Society is an important participant in the world of genomics, and the hope is that understanding the genes that may cause seizures will help to lead to better, more personalised treatment plans. As many as 1000 genes may contribute to the causes of epilepsy, once again highlighting the complexity of the medical condition.

BBC article

Professor Sander also highlighted the need for epilepsy treatment to consider the whole person. Treating seizures is one thing. There are over 30 different treatments available, but we all know there is not a single ‘magic bullet’ treatment that will work for everyone. It is, to some degree, a question of informed trial and error. But best practice dictates looking at what else is going on within each individual. Flu, for example, can be a major trigger for seizures. So too can tiredness, over-excitement, and constipation, to name but a few triggers.

Of course our loved ones who are supported by Epilepsy Society tend to be those with the hardest to treat forms of the condition. We support the charity’s work researching the causes and treatment of the condition, and remain eternally grateful to Professor Sander and his colleagues for their discoveries and accomplishments, and their continued endeavours.

(This short report has been provided by the FFES Trustees. Any errors are our own responsibility, and not those of Professor Sander)

8 December at 2:00pm

Sunday Sounds: The Ramshackles Jazz Band Christmas Special

Get ready to be transported to the Honky-Tonks of 1920s New Orleans with The Swing Era's band ‘The Ramshackles’.

This young Birmingham band is led by inventive trumpet playing, traditional washboard rhythm & bold brass bass. Led by Alex Astbury

BBC article

19th November 2024

Lorna Soesman joins FFES Trustee Group

Lorna Soesman has joined the group of volunteers who are Trustees of the Families and Friends of the Epilepsy Society (FFES) charity. Her son Nick lives in Queen Elizabeth House. Lorna has worked in several local authorities as a Children and Families social worker and manager. After retiring in 2016 she enjoyed using the experience and knowledge she had gained over the years, working as a sessional advisor with the Family Rights Group.

The FFES Trustees are responsible for ensuring that our charity adheres to the very clear standards of operation described by the Charity Commission, which regulates all charities. We send a written report to the Commission every year, as well as submitting details of our finances. Any member of FFES is very welcome to volunteer as a Trustee of the charity, as there is plenty of work for all of us to do.

BBC article

10 November 2024 at 2:00pm

A Taste of Southern Africa

Our marimba band's music shares the rich cultures, histories and stories of the people of southern Africa - performed on southern African cultural marimba and mbira instruments, accompanied by percussion, singing and dancing.

BBC article

24 June 2024

A new and extraordinary treatment

News of an extraordinary treatment for people with Lennox-Gastaut syndrome, which is one of the most severe epilepsy syndromes, was carried by the BBC and other news outlets today. At the moment the neurostimulator technology is rare, but the news article reveals it has made an extraordinary difference to the life of the 13 year old boy who is benefitting from the device. The Picostim neurotransmitter is made by UK company Amber Therapeutics.

BBC article

Projects

Navigating the Pandemic
This was a difficult and worrying period for everyone. Keen to help, FFES organised the virtual 2.6 challenge (you could run, jump, bake, it didn’t matter as long as the number 2.6 featured somewhere.)
 
Families participated in the challenge with such enthusiasm and we raised £7,000. This allowed us to buy iPads to spread amongst the flats which enabled regular virtual contact.
 
A successful bid for grant from the National Lottery meant we could build an enclosed garden around the campus coffee shop, install games, and create an outdoor space for people to meet when meeting inside was impossible.

The Tranquillity Nature Trail
The Nature Trail is the brainchild of John and Nicola. They wanted to create a space where residents, and the people who support them, could feel at one with nature. Many residents use wheelchairs, so the Trail needed to be fully accessible.

An unused field on campus was identified as a potential location. Once plans had been approved by the Epilepsy Society, we were able to raise over £30,000, and in May 2023 the diggers moved in and created the flower beds and pathways. Then our team of volunteers set about creating a glorious Nature Trail! See how the Trail has matured since 2023!

The garden before ot was transformedThe garden post transformation
These before and after pictures show the impact of our work!

Since the Trail has been open it has been host to a Grand Opening event. Co-production work between FFES and Epilepsy Society staff brought illuminations for bonfire night; Christmas illuminations during the Christmas fortnight and an animal petting farm. Events are planned throughout the year, and prove to be joyous affairs (weather permitting!)
A watercolour illustration of a fox in a garden
This beautiful watercolour was painted for us by renowned children’s book illustrator Hannah George. It is a symbol for our motivation to want to increase the biodiversity of the area by building the Trail, when originally all we had seen on the existing field was “one bee, one robin and one fox”.

Sunday Sounds
 So many of us find happiness through music. People who have severe epilepsy are no different. In late 2023 two of our members ran the Manchester half marathon, and raised over £13,000. This money is funding a monthly concert series, attended regularly by over 100 people. Home made cakes and refreshments are provided by FFES members, and we’ve invited bands from all over the country to entertain us.
 
The result? Smiles, happiness, laughter and fun! What we’ve found to be particularly wonderful is that at each concert more and more of our loved ones, supported either by their care staff or family member, are taking part in the sessions, either through dancing, or perhaps shaking a musical instrument.
 
It’s a very happy vibe! 

Swimming
We’re working closely with Epilepsy Society staff to provide a group of residents with access to hydrotherapy at the beautiful Woodrow High House pool near Amersham.
 
This is a collaborative endeavour between families and staff which brings great joy to all involved. We know that more residents would find hydrotherapy both physically and mentally beneficial, and we very much hope it will be possible to expand significantly hydrotherapy provision at the Epilepsy Society in the mid-term.

A full ,length pic of the swimming pool with swimmers

Staff Welfare
Our voucher scheme provides staff with £6 to spend as they wish at the Phoenix café. It’s a small way in which we can thank the people who support our loved ones with such dedication. We know from the feedback we receive that it’s a small gesture that goes a long way

Support us
There are many ways you can support us. You can make a donation here. You could choose to raise money for us the next time you participate in a sporting activity like an organised run or cycle ride. If that’s the case we can help you set up a fundraising website through Just Giving.
 
We’re also delighted when companies choose to support us by nominating us as their charity of the year.
 
Every penny that is raised for the FFES is directed towards activities that benefit the residents supported by the Epilepsy Society, and the people who provide that care.

''I've been a patient in Gowers for many months now. It has been my daily walk round the Nature Trail which has helped to keep me sane."

"It’s breath-taking; such a beautiful place to walk round."

"Thank you for creating such a fabulous space to enjoy time with our loved ones."

About FFES

The FFES logo

FFES has existed since around the year 2000, when around 300 people were supported by the Epilepsy Society. Past committee members worked tirelessly to invite quality speakers to meetings, spent time liaising with senior management and Trustees of the Epilepsy Society, as well as providing entertainment and activities for residents.
 
These days, Epilepsy Society provides 110 people with residential care or supported living services. Typically, these are adults with very hard to treat epilepsy, and some level of learning disability. They are funded by local authorities and the NHS, depending on their level of medical need.
 
Our charity aims to add to the service provided by the Epilepsy Society. In recent years this has involved the funding and development of a beautiful Tranquillity Nature Trail and introducing a series of concerts for residents and staff, the Sunday Sounds programme.
 
We also provide support and information for our members, all of whom have relatives supported by the Epilepsy Society. We seek to work closely with senior management and Trustees of the Epilepsy Society.
 
 We are volunteer led. Our Trustees are the families of people supported by Epilepsy Society. None of our Trustees are paid. We have no paid employees. All the money we raise goes towards fulfilling our charitable purpose.

Join Us!
You can apply to become a member of FFES if you have a relative or friend who is supported by the Epilepsy Society. We have an annual membership fee of £25. Please send an email to our Treasurer John Davies   daviesjt1gb@gmail.com if you would like to become part of our friendly and supportive group of volunteers.
 
There are all sorts of ways in which you could help, too. You could join our gardening group on the Nature Trail. You could volunteer to help at Sunday Sounds. You could become a House Rep, helping to keep other parents informed on the flat or house where your loved one lives.

Nicola Davies

Chair

Nicola has been an upper school teacher all her working life, always pursuing her underlying belief in inclusion and achievement for all. Her daughter Emma has lived at Russell House at the Epilepsy Society for over 20 years

John Davies

Treasurer

John Davies is the Treasurer for the FFES and has a daughter who has lived in Russell House for over 20 years. John is a Chartered Civil Engineer and a Chartered Water and Environmental Manager. He has now retired after working over 40 years in Civil Engineering. He volunteers for the National Trust undertaking archaeological survey work

David Josephs

Vice Chair

David’s son has been supported by Epilepsy Society since 2021. David is non-executive director of various Public Relations companies, and is also a Trustee of the charity Carers UK. In the past he has served as the chair of the Joint Epilepsy Council of the UK and Ireland. He is hugely committed to raising funds for the FFES.

Jules Josephs

Secretary

On top of her role as the charity’s secretary, Jules is a highly experienced mentor for the charity Carers in Hertfordshire, and has an extensive knowledge of how to navigate the care system. She was a highly respected head of department in a large secondary school in Northamptonshire before becoming a full time carer for her son Dominic.

Rex Leyland

Rex is father to two adult daughters both of whom have epilepsy, and thus feels qualified to assist others on their road to finding solutions in all aspects of this disturbing and upsetting condition, affecting all those who surround them. Rex was a restaurateur during his entire working life.

Zara Jalili

Zara has been working in the NHS 10 years, as a GP receptionist, and during the pandemic received a certificate of recognition for her contribution to the national vaccination effort. Her son Mohsen has been at the Epilepsy Society for 14 years, and his passions include puzzles, the Gruffalo and Pom-Bears. When time permits, Zara loves to cook Iranian food, especially for Epilepsy Society events.

Phil Munday

Phil Munday is a retired head teacher and local councillor. His interests are Bridge, badminton and fitness, and he makes use of his management skills in his council work. His son Simon has been a resident of Russell House since 2015

Jane Knight

Jane has now completed more than 45 years of service within the NHS, and still counting. Her son has lived at the Epilepsy Society for nine years. She appreciates the contribution FFES gives to enhance the lives of residents and the support for families

Penny Munday

Penny Munday is a retired Further Education lecturer on Information Technology. Her son Simon has been a resident of the Epilepsy Society since 2015. Penny is also a linguist, an artist, a local historian and a Morris dancer

Andrew Camp

Andrew’s career embraced many roles within the world of aviation. He ran a small engineering company before training to be a pilot. He joined British Airways in 1997, flying all over the world for five years before returning to European routes as an Airbus Captain. Andrew retired from British Airways in 2021.

Lorna Soesman

Lorna has worked in several local authorities as a Children and Families social worker and manager. After retiring in 2016 she enjoyed using the experience and knowledge she had gained over the years, working as a sessional advisor with the Family Rights Group. Her son Nick moved from home to live in Queen Elizabeth House in 2023. During his first year FFES members provided great support, sharing their knowledge and experience to help the family manage this massive change. Nick and his family are regular visitors to the Nature Trail!

Where to go

These venues have all been visited and recommended by family members, but please make your own checks before visiting.

Parks and Walks all with cafes
Black Park, near Slough. SL3 6DS, about 20 minutes from Epilepsy Society (ES)- walks, wildlife, lake, cafe, go ape, picnic areas; beautiful at rhododendron time.
More

Langley Park Country Park, Iver near Slough.  SLO OLS, about 20 minutes from ES. Walks, rhododendron collection. tea rooms...More

Ruislip Lido, HA4 7TU, about 20 minutes from ES.- lake, beach, miniature railway, walks, wildlife, cafés, flat terrain, suitable for wheelchairs. More

Aquadrome - Frogmoor Lane, WD3 1NR  15 minutes from ES Flat terrain, suitable paths for wheelchairs. Free parking. Super café. Radar key needed for toilets. More

Rickmansworth Aquadrome | Three Rivers District Council Disabled sailing run from here by Rickmansworth Sailing club. More

Chorleywood Common and Mission Employable, Rickmansworth Road, WD3 5SG, 15 minutes from Epilepsy Society. The cricket pavilion on the edge of the Common has a super café. Young people with learning disabilities train here. Disabled toilets. Walks are not very wheelchair friendly but lovely countryside and a warm welcome. Mission EmployAble - Fulfilling lives for people with learning disabilities. More

Denham Aerodrome, UB9 5DF, 15 mins from ES.
Watch small planes and helicopters take off and land. Get a drink in The Crew Room café. Limited toilets. Outside and inside seating. The Crew Room in Uxbridge - Restaurant menu and reviews (restaurantguru.com) More

Burnham Beeches Nature Reserve, Hawthorn Lane, Slough, SL2 3TE, 20 minutes from ES.
Easy access walks and sensory trails, wildlife, sculptures, cafe, picnic areas, 2 carparks. Be careful to register on the app, even with a blue Badge.Burnham Beeches and Stoke Common - City of London. More

Adventure Playgrounds
1. Thames Valley Adventure Playground, Taplow, SL6 0PR, about 30 minutes from ESTVAP-supporting children and adults with special needs. Multi-sensory room, lake side activity room, accessible toilets. Fridays are reserved for Adult service users. They also have special Fun Days and a Christmas Fair. More

2. Thomley Hall, Menmarsh Road, Worminghall, Bucks. HP18 9JZ, about 50 minutes from ES. 9 acre site, soft play area, bike track, 2 sensory rooms, café, art room, accessible toilets. Thomley is a magical charity in Buckinghamshire for disabled people. More

Garden Centres
Smiths Garden Centre, 95 Oxford Road, Uxbridge UB9 4DE, about 15 minutes from ES Bertram’s café. Smith's Garden Centre, Denham, Uxbridge. More

Van Hage garden centre, Amersham Road, Chenies, WD3 6EN, about 20 minutes from ES Shopping, clothes, books, presents, cafe, garden tools, plants. More

Rowan’s Garden Centre,  Gorelands Lane, Chalfont St Giles HP8 4AB, about 5 minutes from ES. It takes 15 minutes to walk across the fields but it is not wheelchair friendly. More

Peterley Manor Farm, Peterley Lane, Prestwood, Great Missenden HP16 OHH, about 20 minutes from ES. Lovely outdoor and indoor café and  fruit picking in season Peterley Manor Farm | A family run farm set in the Chiltern Hills, Buckinghamshire. More

Please email juliecjosephs@gmail.com if you have any other recommendations or feedback on the above suggestions.

Wexham Park Hospital

Wexham Park Hospital
Wexham Street
Slough SL2 4HL
Website

Wexham Park Hospital is on the outskirts of Slough, about 20 minutes from Chalfont, and it’s where residents will be taken by ambulance if they need emergency care.

Wexham Park is part of the Frimley Health NHS Foundation Trust

Supporting our loved ones in hospital is never easy. Thus we’ve put together some notes based on the experiences of some of us who have been there. It is by no means an exhaustive guide, but we hope you will find it of some use.

We will add to this guidance as and when we learn more.

Car parking is expensive, but if you have a blue badge, it is free. There is parking directly adjacent to the hospital, but this becomes very crowded from very early in the day. There is a further large car park on the other side of Wexham Street, and in our experience there was always plenty of space here. It’s then less than a two minute walk to the hospital.

There is a large restaurant which sells good quality food throughout the day. There are also smaller coffee bars, and vending machines.

Wexham Park is a very busy General Hospital, which can feel pretty overwhelming at times.

Entrance to the A&E department at Wexham Hospital

Check that your relative is identified as having a Learning Disability on their notes. Do not assume this to be the case. The Learning Disability Nurse is called Davina Obeng. She can be contacted by calling 07826 530591, or by emailing her at davina.obeng1@nhs.net.

She started working at the hospital in February 2024, and will be a useful ally during your relative’s stay at Wexham Park.

When admitted your loved one will have a Hospital Passport with them. The hospital finds this very useful. Make sure that their notes are 'tagged' to identify them as someone with additional needs.

The level of support that Epilepsy Society staff can provide at Wexham Park may depend on the level of support your loved one has during normal times.

There is also a Vascular Team. They have an ultra sound machine which can show where a vein is! It makes taking blood much easier. The Vascular Team can be contacted on 07917 070 523.  

Contacting the neurology team at Chalfont may be difficult. There is no automatic link up between the Neurologist at Chalfont and Wexham Park.

The neurologists at Wexham Park are:
Umair Chaudhury and Krishna Chinthapalli

They are both highly experienced neurologists who are based at the National Hospital in Queen Square, London, but also cover Wexham Park. They know Professor Koepp, so liaison should take place behind the scenes.

At the time of writing there is no epilepsy specialist nurse or EEG machine at Wexham Park Hospital. The EEG is brought in from another hospital and arrives at odd times, which is frustrating.  

Here’s a list of car parking charges (correct as of September 2024). There is no charge if you are a blue badge holder. Simply press the help button at the exit barrier and show your - or your loved one’s – blue badge and the barrier will be raised.

Car Parking charges at Wexham Hospital
This page was last updated in September 2024

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Volunteers working the garden
FFES logo

14 SLICKETTS LANE
EDLESBOROUGH
DUNSTABLE
LU6 2JD
Phone: 07890 555391
Email

The Families & Friends of the Epilepsy Society is a registered charity. Charity number: 1200293. Registered address as above.