Marie’s September/October Update
I hope that our members are well and healthy. It has been busy at my end over the last two months with hospital appointments, work and the kids being back at school, so apologies for not doing last month’s update.
Great Ormond Street Hospital
We were in Great Ormond Street Hospital (GOSH) with Annie at her SWAN’s (Sturge Weber and Neurocutaneous Service) full day assessment in October. Whilst the appointments are needed, I find that they take their toll on us as parents, as it is never nice to hear our children have spikey profiles, aren’t always on par with their peers and hear about the areas where they need additional support. It always takes me a few weeks to process their report and remember labels are just that, and don’t define our fabulous and awesome children and how much they have achieved. The best bit of the day was being able to catch up with two other member families.
Going to GOSH is not everyone’s choice for their child. Every parent is just doing what they think is right by their own family. There is no right or wrong answer as to what families do. If you aren’t already under the SWAN’s team at GOSH and feel that this would be right for your child, you can get referred by your local paediatrician or GP.
I also appreciate that our adult members do not have the benefit of having a full day assessment with a report to support them in trying to get support from local services. Adults with Sturge Weber Syndrome who are experiencing neurological symptoms or difficulties can be referred to Dr Sofia Eriksson at The National Hospital for Neurology and Neurosurgery. Dr Eriksson is expanding her expertise with adults
with Sturge Weber Syndrome. Whilst this is not the same as the multi–disciplinary team at GOSH, Dr Eriksson is responsive and supportive for adults referred to her with neurological symptoms. You can be referred to Dr Eriksson from your GP or local Neurologist.
Railcards
Many members will already know about the benefit of having a railcard for travelling to appointments. There are various cards that you can buy that will help reduce the cost of rail travel. You can apply for these www.railcards.co.uk.
Friends and Family Railcard. This card can be used for up to four adults aged 16+ and four children 5–15 and can save you 1/3 off adult train tickets plus 60% off children’s fares. You must travel with at least one adult and one child (under 16). The cost of the card is: for a year’s card (£30) or a 3 year card (£70).
Disabled Person Railcard. This card saves 1/3 off rail travel for the disabled person and an adult companion. The cost of the card is: for a year’s card (£20) or a 3 year card (£54). There is an eligibility criteria for this card which are on the railcard website and evidence of this will be needed.
If you collect Tesco Clubcard points you can use these as £1 of Clubcard vouchers gives you £3 to spend on railcards.
London Congestion Charge
Another reminder as there are new members to the charity that may not be aware. If you are travelling to GOSH and decide to drive the London Congestion Charge will probably apply. If you hold a valid Blue Badge in the European Economic Area you are eligible to register for a 100% discount even if you don’t own a vehicle or drive. You can apply at www.tfl.gov.uk.
Patient Accommodation
This month there has been a post on the members only facebook group about patient accommodation. There is a patient hotel in Weston House (Opposite GOSH). If you have a hospital appointment or need a room the night before an admission on to the ward, applying for a room at Weston House allows you to travel down the day before and stay the night before so you can have a good night’s sleep and then cross the road to the main hospital the day of your appointment. Priority is given to families who live outside of the M25. If Weston House is fully booked you will be provided accommodation in the local area.
The booking is allowed for two adults and one child although during COVID this was reduced to one adult and one child. The booking will need to be made by a member of staff of the ward you are staying or by the clinic your appointment is with. You can contact patient accommodation direct on 020 7829 7977.
Blue Badge
You can apply for a blue badge via your local authority. You will need to do this online at www.gov.uk/apply–blue–badge. The blue badge is only valid when the holder is driving the vehicle or a passenger and cannot be used if the owner is not present. Your permit and parking clock must be displayed on the front windscreen at all times to avoid a penalty fine. The badge allows you to park close to your destination, either as a passenger or driver. It also allows you to park in allocated disabled parking spaces. The cost of the badge is £10 in UK, £20 in Scotland and is free in Wales. There is eligibility criteria for this and evidence will be needed as will a photo when you apply.
Mobility Refund
Mobility have issued a Good Condition Payment to many users of £350 in October. If you need more information about this go to www.mobility.co.uk.
We are planning a cuppa and catch up for families who have a child with Sturge Weber Syndrome under 5 on Friday 11th November 2022 at 11am. If you are interested in joining us and want the zoom code sending, please email support@sturgeweber.org.uk.
Cuppa and Catch Up – all
We are planning a cuppa and catch up for all on Sunday 13 th November 2022 at 11am. If you are interested in joining us and want the zoom code sending, please email support@sturgeweber.org.uk.
Christmas Card Competition
We are running the Christmas Card Competition again this year. We welcome designs from children and adults, and plan on having the winning design made into next year’s limited edition Christmas cards that will be available via the shop. Please send your design to support@sturgeweber.org.uk. The winning design will not only be made available for sale in the shop but also will receive a £50 amazon voucher.
Achievement advent calendar
This December we are planning on doing an achievement advent calendar on social media. If you are proud of a member of your family whether they have Sturge Weber Syndrome or not (siblings need celebrating too), please send details of the achievement to us together with a picture to support@strugeweber.org.uk.
Friends of Sturge Weber UK
We have now received 3 applications for members who want to join our team of volunteers. Do you have time that you can spare to help the charity? Being a volunteer is a great way to support the Trustees in running the charity, it widens your knowledge and experience, and it looks great on your CV too! You decide what spare time you have to give. We have nearly 300 members who I am sure have amazing skill sets which could help the charity. If you are interested in becoming a volunteer, please email support@sturgeweber.org.uk.
Grant applications
We have received more Make a Difference grant applications in September. The grant application is still open and if you require support from us please contact the Trustees with your application from via support@sturgeweber.org.uk.
Family Weekend 5th, 6th and 7th May 2023
We are currently in the process of securing the date and booking the hotel for the Family Weekend 2023. We are hoping to be able to send the booking forms to members with next month’s update.
The thermos cup is on sale (Reduced to £7.50) in the shop this month. A bargain and perfect for cold morning walks, watching on the side lines of sporting activities or just to keep your cuppa warm for longer on your desk. Go to https://www.sturgeweber–store.org.uk.
Thank yous
We would like to thank fundraisers for September and October who were:
Freya and Trixie for their run
Simon Davies for his sky dive
Louise Barrell for the London Marathon
Yasmin Burns for her cake sale
Marie Cavalier for Great North Run
Money collected in memory of Rosalind Mason
Elland Lane Children’s Charity