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The Park Federation encourages Parents, carers and others dropping off or collecting children from its schools to wear face masks when lining up at the school gates and when on the school grounds.  Clearly, the beginning and end of the school day are a very busy time with the potential for crowding and lack of social distancing.  Therefore face mask wearing could help to reduce virus transmission.  Thank you for helping us to keep your children, other families and our staff members safe.

 

Dr. Martin Young

Chief Executive and Federation Principal

Dear parents and guardians,

This is an important letter to share some information on how we can work together to make sure we can continue to give children and young people the best education in the safest way possible.

One important part of ensuring the safety and wellbeing of pupils, students, parents and our communities is testing for coronavirus. We all have a duty to make sure that the right people have access to get tested at the right time. Every time a test is used inappropriately, a person with COVID-19 symptoms may miss out on getting tested.

Therefore, I ask that you all follow these principles:

you should only book a test if your child has any of these 3 coronavirus symptoms:

• a high temperature: any new high temperature where your child feels hot to touch on their chest or back (you do not need to measure the temperature)
• a new continuous cough: coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours
• a loss of, or change in, sense of smell or taste: a noticeable loss of smell or taste or things smell and taste different to normal
• your child does not need a test if they have a runny nose, are sneezing or feeling unwell but do not have a temperature, cough or loss of, or change in, sense of smell or taste because these are not normally symptoms of coronavirus
• if you are unsure about whether to get a test, please check the official list of symptoms on the NHS website, which is reviewed regularly only the person with symptoms should get a test. https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms/ You do not need to get a test for anyone else in the household unless they also have any of the 3 symptoms listed above. All members of the household need to self-isolate whilst waiting for the test result
• if the person with symptoms’ test comes back positive, other members of their household should continue self-isolating for 14 days and only get a test if they develop coronavirus symptoms
• if a pupil or student in a class or bubble tests positive for coronavirus, anyone who is advised to self-isolate does not require a test unless they subsequently develop symptoms.
• No one else in the same class or bubble as the symptomatic person needs to take any action unless advised by the school or college. Schools and colleges have detailed guidance and access to a Department for Education and Public Health England helpline for advice and support.

Contacts of a person who has tested positive must follow the guidance carefully and in full, which means they must stay at home for 14 days. This is because it can take several days following contact with an infected person before an individual develops symptoms or the virus can be detected. Students should only book a test if they get symptoms.

The NHS has produced some guidance to help parents understand when their child can and cannot attend school which you may find useful.

It is vital for children and young people’s learning and future opportunities that they are able to return to school and college. It is therefore vitally important that all we work together and do our bit to make this possible.

Yours sincerely,

Professor Viv Bennett CBE
Chief Nurse and Director Maternity and Early Years, Public Health England

Dr Susan Hopkins
Interim Chief Medical Officer, NHS Test & Trace
Deputy Director, Public Health England
Consultant in Infectious Diseases & Microbiology, Royal Free, London

What is Rett syndrome?

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.

Rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. It could occur in any family and affects approximately 1 in 10,000 girls born each year and 1 in 40,000 boys.

Almost all cases of Rett syndrome are caused by a mutation (change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes).  This gene contains instructions to make a particular protein (MeCP2) that is vital for brain development. The gene abnormality prevents nerve cells in the brain from working properly.  Almost all people with Rett syndrome have no history of the disorder in their family, and the mutation has happened spontaneously.  Often parents feel that they must have been responsible for their child’s condition but this is not true.  Because the mutation happens spontaneously there is nothing that the parent has or has not done, it is just a random new mutation.

What do we offer?
We provide free support, advice and resources to anyone affected by Rett syndrome.  Amongst our services our Family Support Team offer: help with diagnosis, support groups, advocacy, getting started with communication support and training, regional roadshows, accessing a specialist Rett syndrome clinic, as well as bereavement support.

Why is Rett syndrome almost always seen in girls?

Each person normally has one pair of sex chromosomes in each cell – females have two X chromosomes and males have one X and one Y.

Rett syndrome results when half the cells in the child’s brain and spinal cord are normal and half are abnormal (the child survives, but has a severe disability). This happens when the child has one X chromosome with the severe MECP2 abnormality and one X chromosome with the normal version of the gene. The child is almost always female as males don’t have a second X chromosome.

Rare exceptions of Rett syndrome in males occur when, for example, the male is born with an extra X chromosome so he has three sex chromosomes (XXY; known as Klinefelter’s syndrome), or when the change is found in only some of the boy’s cells (known as mosaicism).

Males who carry the abnormal MECP2 gene on their only X chromosome will usually develop a serious condition known as infantile encephalopathy and will not often survive beyond two years.

Males with less severe changes in their MECP2 gene can live a long life and are affected with learning difficulties but usually less severe than in Rett syndrome. Females who carry such (milder) changes on one of their two X chromosomes will often be perfectly healthy.

How can you help us?
We know there are more people with Rett syndrome who either haven’t been given the correct diagnosis as well as families who have a diagnosis but don’t yet know about us and the free services we provide.  We are particularly keen to reach BAME families who are underrepresented in our community despite the prevalence rate of Rett syndrome is the same for all ethnicities – we are concerned there are families who are missing out on vital information and support, that in some cases can be life-saving.  We would therefore love to engage with those affected and would be ever so grateful if you could help us to help people affected by Rett syndrome by signposting them to our free services.

Attached is a copy of our information leaflet which we would welcome you to share with your contacts in the NHS as well as Social Care and families/carers too.

To show the impact of our work, here are some quotes from families we support ...
Alanna, Mother of Aurora, 5 years old:  “It's a very hard and lonely road but Rett UK are always at the end of the phone when needed. They also create opportunities for families to feel inclusive and keep everyone informed about things affecting our everyday lives.”

Neil, Dad of Elsie, 2 years old:  Our little princess was diagnosed last week.   As soon as my wife and I contacted Rett UK they helped so much with support and hope.   Truly amazing people helping truly amazing little girls. Thank you.

Heather, mum to Ruth, 20 years old: Thank you to everyone who organised the day. As always, I came away with new ideas, fresh confidence and sound advice to try to help my daughter in the best possible way I can. x

Kate mum to Kim, 7 years old: My knowledge and understanding of Rett syndrome have helped me be a better Mum to Kim and that is thanks to RETT UK. X

Our Family Support team can be contacted by telephone 01582 798 911 or by email support@rettuk.org and our website is www.rettuk.org and we also have a Facebook page
https://en-gb.facebook.com/ RettUK/

We also provide a free quarterly magazine, Rett News full of news and information relating to Rett syndrome.  The latest edition can be downloaded here https://www.rettuk.org/ resources/resources-for- families/resources-news/

If you would like to keep in touch please sign up here  https://www.rettuk.org/gdpr or alternatively email on  Donna.Tinch@rettuk.org