Down’s syndrome campaigner sparks change in eye support

A Durham Optometrist’s campaigning work for children with Down’s syndrome, which was backed by MP Roberta Blackman-Woods and several national charities, has resulted in a change in NHS regulations to give parents across the UK wider access to financial help towards buying specially made glasses for their children.

Down’s syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21, which can cause some level of learning disability and particular physical features. Around 700 babies are born with the condition each year in England and Wales.

Family Optometrist Simon Berry specialises in children’s eye care and as well as running his own practice, Simon Berry Optometrist in Gilesgate, works at Sunderland Eye Infirmary as a specialist Optometrist.  His two-year campaign to change the rules on funding saw an online petition attract over 600 signatures.

Prior to the campaign, the Special Facial Characteristics Voucher which offered extra financial support was only available via hospital eye services rather than local opticians. Many children found the regular hospital visits distressing, and parents were frustrated by the lack of frame choices for their children.

Thanks to Simon’s efforts, from April this year the rules on the funding were changed and all children can now access this voucher regardless of whether they go through a hospital or their local optician.

Simon Berry, optometrist, with a patient and his parentsBeverley Dean, who is a trustee of the registered charity and support organisation Down’s Syndrome North East, said: “Children with Down syndrome have special facial characteristics that can include small, flat noses and malformed ears. Some may also wear hearing aids, all of which mean ordinary glasses do not fit and a more expensive, specially made frame is needed, which is where the vouchers are invaluable.

“We are hugely appreciative of the work Simon has done. His campaign will make a difference to children right across the UK and not just in the North East.”

Her husband Colin Dean added: “Our son William, who is 10, currently has to attend five different clinics in Durham and Newcastle. He gets quite anxious in hospitals and it is a lot more comfortable for him in the family-friendly surroundings at Simon Berry’s practice where there is a much better choice of frames available, so William has more choice and a say in which frames he wants and how he looks.

“It’s so much more convenient for all of us getting his eye examinations and glasses through our local family optician rather than the hospital. With the help of the voucher we can make sure he gets the eye care that he is entitled to.”

Simon Berry commented: “This is fantastic news and something we have campaigned about for a long time. We first raised the issue with NHS England over two years ago.

“Under the old rules, patients with exactly the same clinical need received a different level of service depending on how they accessed the NHS service. It also varied throughout the UK depending where the patient lived, how individual authorities interpreted the regulations, and how referrals to local hospital departments are organised.

“Far from being what should have been a simple change of regulations, it has taken two years of countless emails and phone calls, an online petition and support from our MP Roberta Blackman-Wood plus national charities including SeeAbility, the Down’s Syndrome Association, Mencap and Down’s Heart Group to get the regulations changed.

“It is a step change in caring for the vision of children with Down Syndrome, and for those with conditions such as Microtia – missing or small ears – or facial cancers. Specialist frames can mean a better fit, fewer repairs and better quality of vision, which all make a positive contribution to a child’s quality of life.”

Roberta Blackman-Woods MP for the City of Durham added: “When Simon first approached me in 2013 I could not believe that there was no provision for a special facial characteristics voucher to be obtained via the General Optical Services (GOS) and could only be attained from the hospital eye service.  I was therefore very happy to contact the Secretary of State for Health and the Head of Primary Care Commissioning at NHS England to raise this anomaly.

“Although it has been a long time coming I am delighted with the outcome and hopefully many parents and children will benefit from the change in NHS regulations thanks to the persistence and determination of Simon and the charities involved.”

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