How does family support work?
On this page: Why do I need support? / How to refer / Who can be referred? / Our key workers / Initial appointments / Support / Groups
Why do I need support?
The diagnosis of a child with a chronic illness or disability can be very stressful and life can change completely and immediately. Sometimes families also feel isolated, and have difficulties in talking to others, and reaching out for their 'normal' support from friends and family. The Maypole Project staff are specifically trained to create bonds with the family in order to find out what support they need and work in partnership with them to provide it. We all find it difficult at times to reach out for emotional support so The Maypole Project tries to make this process as uncomplicated as possible.
How to refer
Whilst we accept enquiries about the project and initial contact regarding families from professionals in health, social services and education, unless we have a specific link to a service, referral for support can only be made from families directly phoning The Maypole Project offices.
Who can be referred?
Any family can contact us if they have a child or children with complex medical needs. This is defined as a life threatening illness; the illness diagnosed may threaten life but may be curable (for example cancers), a life shortening illness where the prognosis is that the child may live only to early adulthood (for example Cystic Fibrosis), disabilities which need ongoing medical attention, hospitalisation, operations (for example Aperts Syndrome), or an injury which has resulted in the prognosis of shortened life. Please do not hesitate to contact us for clarification of the appropriateness of referral. Referral can be made at any time from diagnosis onwards, or at times following the cure or remission of an illness which was life threatening, or sometimes following a death.
Our key workers
Key workers are specifically and professionally chosen, and then trained and supported in their work to relate to the whole family facing the diagnosis of a child or children with chronic illnesses. They are all CRB checked. Parents have noted their key worker as being 'caring, compassionate and professional'.
Initial appointments
A key worker will introduce themselves to you at a first appointment, this meeting can be in our offices, in your home, in hospital – the place of your choice. They will explain to you how we work, and help you find out what you need; they will stay with you throughout. They will help you create a 'tailor made' package of support; this can be individual, couple or family group support.
Support
A 'key worker' will be introduced to you at an initial meeting, where we will explain how we work and find out what you need. This individual will stay with you throughout. The whole family can be supported, either individually, as a couple, or as a group.
We can support you in a number of ways, depending on your needs at the time. This is flexible and can change levels throughout. It may be that one family member wants counseling sessions, another may want a chat over a cup of tea while playing with the baby. Sometimes we can act as a 'lifeline' by phone when things are just too busy to stop to meet face to face - another meeting can be arranged later when life is quieter.
We can meet with you at home, at our offices, with children in school, or sometimes in hospital. You may want support at a hospital appointment - someone to be with children, someone to provide an extra pair of ears, someone to remind you of the questions you wanted to ask. You may want help explaining to your child's school how best to deal with the situation and how they can help you and your child/children. We can help you find whether you and your child are entitled to any extra financial support.
One user of our service said: "Sometimes it is hard to acknowledge you need some support, let alone ask for it. But the staff at The Maypole Project are welcoming and experienced, and those first meeting nerves are soon forgotten. Then you learn to accept the support and wonder why you didn't ask earlier!"
Groups
Maypole Project groups run at the request of families. They can be parent support groups, grandparent support groups, art groups for children or parents, and sometimes training groups, for example parenting skills or living with children with complex medical needs etc. Please contact us for details of groups already running, or with groups you would like us to run.
