The children's eye service

Introduction

This booklet has been written to give parents and carers of children who attend the eye clinic some information about the different health care workers they are likely to meet and their roles within the department. It also explains the educational and social support available for children with a visual impairment and provides local contact numbers.

Hospital Services

Visiting the orthoptist

The orthoptist is a health care professional who specialises in assessing and treating visual conditions in adults and children.

It is likely that when you visit the eye clinic, your child’s vision will be assessed by an orthoptist prior to the doctor’s consultation. He/she may also test the alignment of your child’s eyes to find out if they have binocular vision (when both eyes co-ordinate with each other) or to prove the presence of a squint (turn, glide, and lazy eye). This gives an insight into the long term visual capabilities of the child.

As babies and pre-school children are not able to simply read down the letter chart as adults do, the orthoptist is trained in a variety of ways to assess how the children see. The tests are usually played as games and are completely non-invasive; the orthoptist will try their hardest to make the hospital visit as fun and as non-threatening as possible.

If one or both of your child’s eyes are impaired, the orthoptist will be the primary person to provide support for wearing glasses. If needed, they may recommend patching therapy; which is aimed at covering the good eye in order to allow the vision in the weaker or lazy eye to improve. You will probably visit the orthoptist regularly to monitor your child’s sight and to demonstrate improvement following glasses and/or patching.

The orthoptist is also trained to administer dilating eye drops (cyclopentolate and phenylephrine) before the child visits the consultant. A local anaesthetic drop (proxymetacaine) may be given first, to prevent the drops from stinging. However, the orthoptist may decide against this if the child is particularly restless or frightened of the eye drops. Currently for most cases the ophthalmic nurses put the drops in, so that the child does not associate visits to the orthoptist with being frightened. The drops we use in clinic may not be effective in children with dark brown eyes and a different drop (atropine) may be given for you to instil at home before the next appointment if this is the case.

Badges and stickers are always on hand to give as rewards.

The ophthalmologist

The paediatric ophthalmologist is a qualified doctor who specialises in children’s eye problems and surgery. The service is led by Miss Allen, Miss Muthasamy, Mr Vivian and Mr Somner. In addition, there are several other doctors who make up the medical team. The ophthalmologist will usually see your child once the initial assessment has been made by the orthoptist. He/she will test to see if your child is long or short sighted and will examine your child’s eyes.

The doctor will discuss your child’s eye problems with you and will explain the treatments available for your child’s eye condition. If glasses are required, the doctor will give you a prescription and an NHS voucher to take to your high street optician for the glasses to be made up. Alternatively a dispensing optician is available in Clinic 3 on Mondays and Wednesdays from 09:30 – 13:00hrs and Fridays from 14:00 – 17:00hrs. This is a drop-in service and does not require an appointment (times/days correct as of November 2019). The doctor will arrange for your child to have regular follow-up appointments with the orthoptists to check their visual progress with the glasses.

Very occasionally it is difficult to examine an infant or young child adequately and arrangements may be made for your child to be examined while he/she is made drowsy by medication. This procedure is called ‘examination under sedation’.

Sometimes special tests are required before the ophthalmologist can be sure about a visual problem. He/she may arrange for your child to have imaging investigations such as a CT scan or MRI scan and occasionally electro-diagnostic testing may be required which may require an appointment at Great Ormond Street Hospital or Moorfields Eye Hospital in London for the tests to be performed. The ophthalmologist will arrange to see you and your child again to explain the results of these tests. An appointment may also be made for your child to see a paediatrician (children’s doctor).

If the ophthalmologist recommends surgery for your child’s eye condition, he/she will explain the procedure fully and give you a date for surgery.

Depending on the type of surgery needed, the age of your child and any underlying medical conditions; surgery may take place either as a ‘day case’ in the Cambridge Eye Unit, or with your child admitted as an ‘inpatient’ with the possibility of an overnight stay on a paediatric ward.

If your child has impaired vision, which cannot be corrected with glasses, the ophthalmologist may contact the specialist teachers for the visually impaired in your area. Their team can support you and your child from birth at home and later during his/her education. With your permission, and if they meet the vision criteria, your child may be registered as having impaired sight which may help you to claim additional benefits for your child. The ophthalmologist may also arrange an appointment for your child to see a specialist optometrist who has experience in providing magnifying aids to help your child.

Often there is too much information to take in at one consultation. You may need time to think about the information given and think of other questions you want answered before agreeing to treatment. If you want to discuss the diagnosis and treatment options with the ophthalmologist, please contact the department to arrange another appointment. You can also leave a message with the consultant ophthalmologist’s secretary and a doctor can contact you by phone. Alternatively you could refer to the paediatric ophthalmology nurses as a point of contact and source of information (01223 596414).

Children’s Low Vision Services

Low Vision Clinic The low vision clinic is a specialist clinic for children with impaired sight that cannot be sufficiently improved with glasses. You will be seen by a specialist optometrist.

A low vision assessment will incorporate slightly different measures of vision from those carried out in a regular eye test. More emphasis is placed on the child’s interests and activities and offering appropriate aids to optimise their visual function and general interaction within their environment.

Ideally, children should be first assessed about the age of 4. They do not need to be able to read. Findings will be shared with parents and teachers to ensure maximum benefit when they start school. Regular visits to the clinic ensure that as children get older, their changing needs and abilities can be assessed and addressed.

Low vision aids are a variety of devices, which help someone with low vision make the most of what they can see. These include optical devices such as special spectacles, tinted lenses and magnifiers. Optical aids can be supplied on a loan basis by the low vision clinic.

The optometrist can also advise on other strategies including lighting and non-optical aids as well as technology such as video magnifiers and computers. Electronic devices can often be provided in school through the special educational needs process. Otherwise they can be bought privately or sometimes obtained via a sight impairment charity.

Children do not need to be registered sight impaired or severely sight impaired to take advantage of the low vision clinic. They only need to be referred by their consultant ophthalmologist or other specialist.

Eye Clinic Liaison service

The Eye Clinic Liaison Officer (ECLO) is based in Clinic 14 at Addenbrooke’s Hospital and is available to offer information, advice and guidance regarding the emotional and practical support available to children who have sight problems and their families. They will also explain the registration process if required and give information on associated benefits and entitlements as well as a variety of local and national sight support services.

Certification as sight impaired (partially sighted) or severely sight impaired (blind)

The consultant ophthalmologist may discuss the option of certifying your child as sight impaired or severely sight impaired if they meet the vision criteria. Following the certification process, your child can be registered as having a visual impairment by your local authority Sensory Services team. They hold the register to enable them to monitor the numbers of visually impaired people living in the area and provide the best possible service for people with sight problems.

The consultant ophthalmologist will decide whether your child is eligible to be registered by measuring their level of their vision (acuity and visual field). If the child meets the criteria and you are happy to sign the consent, the consultant can then certify them as either sight impaired or severely sight impaired by completing a certification form (Certificate of Vision Impairment/CVI).

The CVI form will then be sent to your local authority’s Sensory Services team who will contact you and ask if you agree to your child being added to their register. They will also offer a visual impairment needs assessment and habilitation training if required.

If your child is registered it may help you when claiming certain benefits and concessions. This can be discussed with the Eye Clinic Liaison Officer. A child does not need to be registered in order to access specialist sight support from Sensory Services or Visual Impairment teams in education or in the community.

Clinical Psychology Service for children and young people

We have developed this service to provide psychological support to families who attend the eye clinic with a child/young person with visual problems.

How could Clinical Psychology input help your family?

Some of the things families seek help with are:

• adjustment to the diagnosis of an eye condition (for parents and children)
• concern about educational and social issues
• feelings of anger, anxiety or low mood associated with the eye condition
• coping with medical procedures and medicines associated with the eye condition
• ways of coping with some of the possible difficulties that may arise from living with a visual impairment, e.g. school transitions, increasing independence, relationships, “being different”, using visual aids, separation anxiety, sleep difficulties

How to arrange a referral

You can ask to be referred by the orthoptist or eye doctor you see in clinic and a clinical psychologist will then contact you. Appointments are arranged either in Clinic 3 or at other locations around the hospital.

Community services

Qualified Teacher of the Visually Impaired (QTVI) support

Wherever you live you should find that your local authority children and young people’s service employs a team of specialist teachers trained in working with children who have significant visual impairments. This service may be called the visual impairment service, the visual support service or the sensory support service and usually supports 0-25yrs.

Specialist teachers can work with children from the earliest months of life until the time they leave education, whether or not the child has additional disabilities.

In many authorities there are specialist teachers additionally qualified in working with children who have multiple disabilities and visual impairment (Multi-Sensory Impairment/MSI Teachers).

Referrals

If your child’s ophthalmologist feels that your child would benefit from being assessed by the visual impairment teachers he/she will discuss this with you and make the referral.

Once a referral is received a specialist teacher will ring or write to you to arrange a home visit. During this visit the teacher will assess the level of need and will agree with you a programme of support.

Role of the (QTVI) specialist teacher in the early years

All specialist teachers recognise the importance of early identification and intervention for preschool children. They offer a number of services to assist you in ensuring the best start for your child. These include:

• On-going assessment and observation of your child’s functional vision set within the context of overall development.
• Assistance in planning appropriate educational/ developmental strategies.
• Advice on how to stimulate your child’s vision and motivation for movement.
• Help in understanding about your child’s vision and how it might affect development and learning.
• Loan of, and advice on, appropriate toys, books and equipment to help you and your child.
• Teaching of specific skills depending on your child’s level of vision for example: developing good use of hands to identify and discriminate between objects; listening skills, pre-mobility and environmental awareness, pre-braille, self-help skills etc.
• Information on support groups, voluntary agencies and local contacts including opportunities to connect with other parents of children with visual impairments.
• Help in ensuring your child has an appropriate pre-school placement and additional support if necessary.
• Specific training for staff in your child’s pre-school, nursery or school.
• Mobility and orientation support, referring on for training for your child if needed.
• Contributing to the statutory assessment procedure if your child requires an Education, Health and Care Plan (EHCP).
• Working with other professionals to ensure a co-ordinated response to the needs of your child and your family. Other professionals may include paediatricians, physiotherapists, speech and language therapists, social workers and health visitors as well as the hospital’s eye clinic staff.

Sensory services

The diagnosis of visual impairment can be an overwhelming experience for families; however parents do not need to feel that they have to cope alone. Sensory services aim to work together with colleagues in health, education, welfare benefit departments, housing and voluntary organisations. This is to ensure that children with visual impairment and their parents receive maximum support, information and appropriate opportunities to enable each child to develop their independence. Sensory services maintain the register for children who are registered as sight impaired (partially sighted) or severely sight impaired (blind) and are therefore responsible for assessing the needs of such children. They provide information about registration, potential benefit entitlements, and other significant services available. As such, the service ensures that children receive their full and rightful entitlement for assessment of need in accordance with current legislation. However, registration is not a pre-requisite for accessing appropriate early intervention habilitation support.

Cam Sight

Cam Sight is the local charity offering support services and activities to children and young people with a visual impairment and their parents or carers. This includes the services of their Family Support Worker and regular children’s groups (Pre-School Group, Youth Group, and Teenager Group). There are also equipment centres, with one-to-one support available for trying out a range of technologies, in Cambridge and Wisbech.

If you would like further information please contact their Children and Young People Service at: Cam Sight, 167 Green End Road, Chesterton, Cambridge CB4 1RW Telephone: 01223 420033
Email Camsight Information
Camsight website (opens in a new tab)

Contacts

Addenbrooke’s Hospital

Paediatric Ophthalmology, Clinic 3, Box 41, Addenbrooke's Hospital, Hills Road,
Cambridge, CB2 0QQ. Telephone: 01223 806000
Secretary to Miss Allen, Miss Muthusamy, Mr Vivian and Mr Somner - 01223 216700
Paediatric Ophthalmology Nurses - 01223 596414
Orthoptists – 01223 216528
Dispensing Optician (Kieran Doyle, RYCO Optics) – 01638 280879 / 07809 721879, Email RYCO Optics Information (present in clinic on Mon/Wed 9.30-1pm, Fri 2-5pm)
Eye Clinic Liaison Officer - 01223 216577 (emotional and practical support, low vision advice and guidance) Mon-Fri 9am-5pm

Email Low Vision Service
Clinical Psychology Service for children and young people - 01223 216878

Sensory Support Team 0-25 years (Cambs)

Cambridgeshire County Council - Tel: 01480 373434

Cambridgeshire County Council website (opens in a new tab)

Please note: Every local authority provides a service. Please contact our Eye Clinic Liaison Officer for details of the equivalent teams in other counties if required.

Additional local area contacts for children and families

Suffolk Sight: the Association offers information and support to all visually impaired people. We have many social clubs incl. a monthly Saturday Children's Group (age 5+) 10.30-12.30pm. Tel: 01284 748800

Sight Concern Bedfordshire: runs a Luton-based Family Group, first Saturday of every month between 10am and 12pm. Tel: 01234 311555

Vision Norfolk: YoungEyes is the name of our group of young vision-impaired friends (aged up to 18 yrs) and their families. Tel: 01603 573000

Please note: Other local charities may offer services in your local area. Our Eye Clinic Liaison Officer can give you the contact information for similar services in other counties.

Additional national contacts for children and families

• Starting Point: download leaflet
• Sight Advice FAQ: online advice hub
• Sightline Directory
• RNIB
  • Helpline: 0303 1239999
• LOOK-UK: supports young people and families living with vision impairment.
  • Tel: 07464 351958
• VICTA: improving the lives of children and young people who are blind or partially sighted, support and activities.
  • Tel: 01908 240831
• Royal Society for Blind Children: provides a range of services for blind and partially sighted children and young people, their families, and the professionals who work alongside them.
• Guide Dogs
  • Telephone: 0800 781 1444
  • Email Guide Dogs
• Blind In Business: a national charity which can help young people into work and runs training events for families
• Sense: (support for deaf blindness and associated disabilities)
  • Telephone: 0300 3309250
• SeeAbility: sight loss and additional disabilities
• Scope
  • Telephone: 0808 800 3333
• Contact a Family
  • Tel: 0808 8083555

Eye Condition Specific Support

• Retina UK (opens in a new tab)
• Nystagmus Network (opens in a new tab)
• Albinism Fellowship (opens in a new tab)
• Macular Society (opens in a new tab)
• International Glaucoma Association (opens in a new tab)
• Bardet-Biedl Syndrome UK (BBS UK) (opens in a new tab)
• Stickler Syndrome UK (opens in a new tab)
• The Neuro Foundation (Neurofibromatosis) (opens in a new tab)
• Usher Kids UK (opens in a new tab)