Retinal Dystrophy information day

NBCS is holding an information day for parents of children with Retinal Dystrophy at Queen Alexandra College in Birmingham on Saturday 25 February 2012.

The theme of the day is ‘Supporting Parents’. It will explore the emotional impact on children and their families, and discuss how to meet their educational needs. There is no charge to parents.

The day starts at 9.30am, when parents will be welcomed with coffee, followed by an introduction to the day by Wendy Sainsbury, Head of Family Support, Early Intervention & Information at the National Blind Children’s Society.

At 10.15 Paula Thomas, Eye Clinic Liaison Officer at Great Ormond Street Hospital for Children in London and herself registered Severely Sight Impaired with a form of Retinal Dystrophy, will give a talk entitled Life Experiences.

At 10.45 Barbara Norton follows with a talk on Genetics and Counselling. Barbara is a c ounsellor in the specialist Retinitis Pigmentosa clinics at Moorfields Eye Hospital in London.

After a Question and Answer session ending at 12pm there will be a tour of the college and lunch.

At 1.30pm Wendy Sainsbury will give a brief introduction to the afternoon’s agenda, which starts with a session entitled Meeting Educational Needs led by NBCS Education Manager Clive Matthews with parent Melodie Haines.

Melodie, the mother of a school-age child with aggressive Retinitis Pigmentosa and herself registered blind with the condition, was referred to Clive when she needed support in obtaining the most appropriate local authority educational provision for her son. This then required an appeal because the local authority refused to statutory assess, and then another appeal because the statement of special educational needs was inadequate.

At 3.10pm Sue Drew, Outreach Officer for the charity Retinitis Pigmentosa, Fighting Blindness (formerly the British Retinitis Pigmentosa Society, will give a brief talk about its work.

After a final Question and Answer session with the panel, the day will close at 4pm.

Below are brief biographical notes of the main speakers and organisers of the day.

Wendy Sainsbury BA (Hons), Pgc (ECLO)

National Family Support, Early Intervention & Information Manager

National Blind Children’s Society

Wendy has spent many years working in the field of visual impairment and has supported over 7,000 families of children with visual difficulties. She has a great insight into the needs of families, especially at and around diagnosis.

In the late 1980s, Wendy helped to form Shropshire VI Children’s Support Group which she chaired for a number of years following its registration as a charity. In 1994 she joined LOOK, National Federation of Families with Visually Impaired Children, eventually setting up its information service and ultimately taking on the role of Manager of Children’s Services. In 2004 Wendy joined NBCS, and was instrumental in setting up its National Family Support and Information Service.

Wendy has been involved internationally in the field of VI and sat on the Administration Council of VIEWS (VI Education Worldwide Support), based in Belgium. She has been a member of the Vision 2020 UK CYPVI Group since its inception in 2004. She served for three years on the Royal College of Ophthalmology Lay Advisory Committee and was elected to the council of the International Glaucoma Association (IGA), where she served for three years. Wendy was also a parent adviser for the IGA and supported the formation of Tadpoles, a national support network for parents and children with Congenital Glaucoma.

Wendy has presented papers at many conferences both in the UK and overseas. Her subject has been mainly focused around the need for early intervention and coping strategies for parent of pre-school children. She has also spent time in India and Africa, exploring the provision available there to children with visual difficulties and their families.

Hazel Russell Dip.Counselling, HNC

Family Support Co-ordinator

National Blind Children’s Society

Hazel has worked as Family Support Co-ordinator for the National Blind Children’s Society for the past seven years, supporting and advising parents of children with a visual difficulty as well as professionals, undertaking referral details, signposting to the appropriate NBCS service and/or organisation, while also working with families on her caseload.

Hazel worked for four years in a similar role for LOOK, National Federation of Families with Visually Impaired Children and for fifteen years for Birmingham Crossroads Care, a UK charity providing home respite care for people with physical/sensory disabilities.

Hazel is a qualified counsellor and psychotherapist and is a member of the British Association of Counsellors and Psychotherapists (BACP). She is an accredited CRUSE bereavement counsellor, and has also in the past worked as a volunteer at Sandwell MIND and for a West Midlands-based youth project, Leaps and Bounds.

Hazel is the Children’s Services representative on the Vision Impairment Network for Counselling and Emotional Support (VINCE), a sub-group of Vision 2020.

Paula Thomas

Eye Clinic Liaison Officer, Great Ormond Street Hospital for Children, London

Paula describes herself as a child of the 70s. The elder of two children, she was educated in Sussex, Warwickshire and Oxfordshire. She has travelled the world widely and has enjoyed three-day eventing, ice skating, all water sports and jumping out of aeroplanes. Married to her partner of twenty years she is mother to a ‘very lively three-yearold comic’.

Paula’s career has included working and training race horses, working in the china department for Harrods, twelve years in various jobs with RNIB and currently holds the position of Eye Clinic Liaison Officer at Great Ormond Street Hospital.

She has a form of retinal dystrophy which has deteriorated over the years and is now registered Severely Sight Impaired.

As she says, ‘My left hand man is Sadler who is a very distinguished and seasoned black Labrador retriever guide dog. My life has, and continues to be, full of adventure, battles, laughter and rollercoasting emotions. I am a daughter, sister, wife and mother and my sight loss is part of my life – and not my life.’

Barbara Norton BSc(Hons), Diploma in Sociological Studies, Diploma in Applied Social Studies, CQSW

Moorfields Eye Hospital, London

Mrs Norton is the counsellor in the specialist Retinitis Pigmentosa (RP) clinics at Moorfields Eye Hospital in London. Since January 1992, she has worked in the multi-disciplinary team led first by Professor Alan Bird and more recently by Mr Andrew Webster. Barbara also works with Professor Tony Moore.

Following graduation with an Honours degree in Human Biology and Anatomy, Mrs Norton worked as a social worker with Derbyshire County Council from, obtaining her social work qualification from Sheffield University.

Based on personal experience of Retinitis Pigmentosa, Mrs Norton has contributed widely to the work of charities for the visually impaired. She has served on both the Management and Welfare Committees of the British Retinitis Pigmentosa Society (now RP Fighting Blindness), as well as being a founder member of the BRPS Helpline team.

Mrs Norton has helped to pioneer the provision of professional counselling, in a multi-disciplinary team, at the point of diagnosis of retinal dystrophies and has spoken widely on this subject at medical and social work conferences.

Melodie Haines

Carrier of X-linked Retinitis Pigmentosa and mother of a son who inherited the condition.

Melodie is a manifest carrier of X-linked Retinitis Pigmentosa and was registered partially sighted in 1996 at the age of 34 when she was told she would probably not be registered blind until I was 70 or 80. In fact she was registered blind three years later in January 1999. Later in 1999 she found she was pregnant with her son Jude, which was a surprise to her husband and herself as they had been told they could not have children naturally and had just turned down IVF.

Jude was diagnosed with an aggressive form of X-linked RP at the age of four. He attended a local school and Melodie made them aware of his sight difficulties. She assumed that Jude’s school and the local authority Specialist Visual Impairment Support Team would be helping him in an appropriate manner and appropriately support his visual difficulties.

Unfortunately, this did not happen and it was only brought to her attention when a Monitoring Report was sent home from school. Melodie felt the report did not reflect her son’s needs or even seem to be written about him personally. She was so upset she showed it to the Family Support Officer at Moorfields Eye Hospital in London who advised that the family’s local authority and school had no concept of Jude’s sight limitations. This was the turning point and the beginning of a two-year battle to get Jude the support he needed.

Melodie was referred to Clive Matthews at the National Blind Children’s Society, who warned her that challenging the situation would be stressful; he could not take the stress away, but would be there to support the family through the process.

Clive Matthews B Phil, Dip Rehab, Dip SW, Cert Ed

Education Manager

National Blind Children’s Society

For the past four years Clive has been an Education Manager with the National Blind Children’s Society as part of a team of four Educational Advocates/Advisers.

Before starting with NBCS Clive has been part of teams within a:

• Residential and day independent specialist further education college working with young people 16 – 25 visually impaired and sometimes with other needs too
• Residential and day independent specialist school working with young people 11-19 multi-disabled and visually impaired
• Local authority peripatetic sensory impairment team working with young people visual impaired and sometimes with other needs 0-19
• Two social services Children with Disabilities Teams working with young people visually impaired and sometimes with other disabilities 0-19 and their families
• Two hospital-based Child Development Centres working with young people visually impaired and sometimes with other disabilities 0-4 and their families

Clive was a Trustee with LOOK for a number of years and was also a member of the Scientific Committee of VIEWS (Visual Impairment Education World Wide Support).

Recent papers delivered at conferences include:

• RNIB Vision 2003. ‘Teaching Employability Skills to young people.’
• Mary Kitzinger Trust Conference 2006. ‘Transition and Independence between School and Employment.’
• 12^th ICEVI World Conference 2006. ‘Encouraging the transition into adulthood by accessing the community within interactive community based projects.’
• 4^th IDP Africa Forum Nairobi 2007. ‘Blindness, no barrier to employment?’

Sue Drew

Outreach Officer

Retinitis Pigmentosa Fighting Blindness

As Outreach Officer Sue aims to reach Retinitis Pigmentosa patients who are not aware of the charity’s work and the information and support services it provides.
These include the newly diagnosed, often children and young adults; they and their families are in great need of emotional support and information. Patients in ethnic minority communities, particularly the Pakistani community where the incidence of RP is high, are often unaware of the help that is available to them.

Other marginalised groups of RP patients include the young, the elderly and those living in remote parts of the country where eye clinics and support services are often distant or absent.