Mum of disabled child writes open letter to university over future of Worcester Snoezelen

Dear Sirs, I am writing to you as the extremely concerned mother of a beautiful 7 year old daughter with disabilities. My daughter Hazel has a rare condition; Septo Optic Dysplasia as well as Hydrocephalus and mobility difficulties.

She is blind and struggles with sensory difficulties as well as having a low level of mobility for her age, she is however an intelligent and creative little girl, full of charisma and with an unstoppable enthusiasm and joy for life.

She started attending sessions at Worcester Snoezelen at the age of 6 months and has been using their facilities in a variety of ways on a weekly basis ever since.

I was distressed and needless to say disappointed to receive a letter from Worcester Snoezelen this week that made it clear that the proposed terms you had stated for their new lease would have a massive impact on the current provision of services by the charity including the potential need for re-location or loss of their much valued Music and Art services and major restrictions on any potential for them to improve or expand their centre.

My devastation at the potential loss of Hazel's beloved weekly Music sessions spurred me into action and on Wednesday of this week I created the 'Save Worcester Snoezelen' Facebook group to bring this news to the attention of other parents and carers of service users as well as the many supportive members of the local community who hold Snoezelen dearly in their hearts.

The response was overwhelming, with 500 members joining the group within the first 5 hours, and a steady stream of new members ever since with our numbers now over 1000.

Individuals took it upon themselves to raise awareness of the issues in a variety of ways, a petition was started, local MPs have been contacted along with the local press, TV and radio services and most importantly the news spread amongst the local residents.

I was thrilled to see that the University had issued a statement as a response to our activities on Thursday afternoon - you are listening and responding, maybe you're not the big baddies after all?

The statement at first glance looks like it promises a lot to Worcester Snoezelen but on closer inspection makes no firm promises of anything apart from the eviction of the charity from the Sheila Scott building at the end of May.

Statements such as 'the University has previously offered a small parcel of land to allow the Snoezelen to further develop this building' are misleading, it does not confirm that the offer of this land is still being extended and adds caveats such as 'If the Snoezelen has the funds and the desire to build this extension' when the University Management must be aware that the grants required to raise those sort of funds usually require the charity to hold a lease of at least 10 years, a term that the University has not confirmed it will grant.

The Statement claims that they have only recently become aware of the need for a longer term lease to raise funds, however I personally approached Snoezelen about putting them forwards for the Children in Need DIY SOS Big Build programme over 18 months ago.

I was informed at that time by Snoezelen that the short term lease would be a stumbling block and when I asked the question of whether the University would grant something longer term I was told “We're trying our hardest.”

My personal experience tells me that the University have on some level been aware if this issue for a much longer period than their statement suggests.

I'm glad to see that the University responded so quickly to the public concerns over this issue, it shows that they do take into account the opinions of the community in which they are based. I would, however, be delighted to see some firmer promises issued by the University within the next few days.

It is the request of Snozelen's public supporters that the University Management should consider offering the following to Worcester Snoezelen as soon as they are possibly able and that they offer it without any caveats or conditions that restrict the valuable service that the charity offers in any way:

• A longer-term lease, at least 10 years as this will enable Snoezelen to apply for the bigger funding grants that are needed to improve and extend it's facilities.

• A lease that includes the small parcel of land mentioned in their statement with full permissions to build replacement Art and Music facilities on this land.

• Written permission for a sensible on-site, short-term solution to the removal of the current Art and Music rooms (eg portakabins on the site) whilst new facilities are built.

It is my intention that the public campaign for awareness regarding these issues will continue until such time that the University Management agrees to these points publicly and without room for caveats or addendum or until Worcester Snoezelen confirm that they are in possession of a lease to their complete satisfaction that has been signed by both parties.

I would also like to ask the following questions of the University Management:

1. How can the University management undermine the opinions of it's own students? Students who have voted Worcester Snoezelen as their current charity of choice and have worked extremely hard to raise public awareness and money for the charity.

2. How can the University management undermine the hard-work and dedication of it's own staff? Teaching and administration staff who have chosen Snoezelen as it's favoured charity in the past and always get involved in fund-raising for the cause.

I personally ran the Birmingham Half Marathon alongside some of these wonderful staff a couple of years ago to raise money for Snoezelen.

3. How can an establishment that claims to be passionate about and dedicated to Education hinder the educational progress of vulnerable Snoezelen service users?

My daughter Hazel has a Statement of Educational Needs that clearly states the benefit of her weekly music sessions at Snoezelen to her education and gives permission for these sessions to be carried out during school hours.

Thanks to the facilitation of Snoezelen, Hazel was the youngest person in the country to take an exam with the London College of Music at the age of 3, an exam which she passed with distinction. Snoezelen takes part in running the ASDAN scheme, a system of training that aims to help people with disabilities gain a range of qualifications in small manageable chunks.

These are the questions that I have been asked this week by mums on the playground, friends at the supermarket till, University staff who have contacted me privately and anonymously and Students and Alumni of the University who I am lucky to count amongst my closest friends.

These are the questions being asked by parents and carers across the county, the people who speak on behalf of a section of our society who have no voice of their own. I would greatly appreciate answers to these questions and I'm sure the local residents would love to hear the University's response too.

I sincerely hope that these issues can be resolved quickly and amicably without the need for Snoezelen to give up the £49,000 of Peoples Millions funds that we all worked so hard to gain votes for that was intended to create a new interactive play zone within the centre.

I hope that the University's management team can look to their consciences and place a value on this asset that does not come with pound signs attached and that cannot be measured in percentages.

A value that can only be estimated by the smiles on the faces of the 350 people who walk through the door each week and the thousands of positive stories that lie in the memories of those who have been touched in some way by the wonder that is the Worcester Snoezelen Centre.

Yours in anticipation, Lenny Ledgerwood.