Having a child diagnosed with a sight impairing condition can often be very difficult for parents and the rest of the family. The family support service (FSS) provides early and ongoing support to reduce the pressure such a situation places on families. The service it provides ranges from discussing about your child’s eye condition and the implications it could have to linking up with your local social services so that you can get the appropriate support as soon as possible. It also provides advice on financial matters (statutory benefits and allowances) and your child’s education and development.
As each patient and family is different, the family support specialists tailor their approach appropriately to meet individual needs. For example, some parents or carers may want access to all available information whilst others may need time to adjust and digest smaller chunks of information.
In the UK, only a few eye hospitals have a dedicated family support service. For those departments that do not have it, such service is usually facilitated by the Low Vision Clinic and the Eye Clinic Liaison Officers (ECLOs).
It provides patients and families access to information and support for the following:
- Practical advice for visual difficulties experienced by a patient (poor vision in dim conditions, severely restricted field of vision, light sensitivity etc)
- Early development of a child with sight impairment
- Improving functional vision
- Education and learning
- Appropriate toys, equipment and education materials (Braille input)
- Emotional support
- Registration for sight impairment
- Financial issues (Disability Living Allowance and other statutory benefits)
- Relevant charities
- Referral to the local sensory support service
- Coordinating meet-ups with other families having similar experiences
Apart from these services, family support specialists are also able to accompany patients and their parents or carers during clinic appointments. This way, they can feel more at ease in what is already an intimidating situation, especially for patients with additional needs or parents who are attending to receive a potentially life-changing diagnosis for their child.
The FSS can be helpful in the following situations:
- Patients suffering from autism or developmental delay
- Only one parent is present with a baby or a complex needs patient
- Anxious or upset family members
- Parents suffering from a learning disability and may have difficulty comprehending the consultation
- Families receiving diagnoses, particularly those with life limiting and deteriorating eye conditions
- Safeguarding issues are present
The Family Support Service at Moorfields consists of two Qualified Teachers of the Visually Impaired (QTVI), an ECLO and full-time administration support.
During the initial visit, you and your child will see a large number of healthcare professionals, which can be bewildering, anxiety inducing and exhausting, particularly if you have travelled a long distance and are unfamiliar with London, its transport systems and the hospital itself.
If the FSS are aware in advance, a member of the team will contact you a week earlier to introduce themselves and offer reassurances. Once you arrive at Moorfields for your child’s appointment, the FSS will support both you and your child through the system. They will then follow-up with a phone call later in the week to provide an opportunity for you to talk about your concerns.