Education, Training, Support and Advocacy Service.
Our Support Service is based in a purpose built building in Sandwell
How can we help?
Our main aim is to provide advice, advocacy & support to children, adults and families and others that are affected by Sickle Cell or Thalassaemia.
When a child is first diagnosed with Sickle Cell or Thalassaemia it is a very emotional and stressful time for the parents and other family members. Parents may feel socially isolated, frustrated and under a great deal of emotional and financial pressure. Families need advice and support to help them come to terms with the initial situation and what faces them for the future. Such support will also be required throughout the child’s life, as there may be situations that occur in adolescence and then on into adulthood and this is why we ensure that all the specialized needs of the individual are met.
In having access to the right advice and support helps to ease the stress of those already experiencing a traumatic period.
This is a professional service staffed by specialist support workers.
Every individual or family situation is unique and therefore requires unique support, our primary services include:
Medical
We can provide information and advice on health related issues such as pain management and mobility and we regularly liaise with health professionals such as consultants and pain management advisors.
Education
Advice and information is available on such topics within the nursery and pre-school provision, covering:
- placement requests
- education law
- Your rights
- Disability discrimination
We can also provide training to teachers that look at physical, educational and behavioral aspects.
Housing
We can help you when having to apply for house adaptations, or indeed need to move to more suitable housing.
Financial Assistance
We can apply for grants on your behalf for assistance with the cost of holidays, clothing and bedding.
Equipment
We make referrals for information and advice on mobility issues and the sourcing and purchasing of specially adapted equipment including cars, wheelchairs and even toys.
Benefits
There are some specific benefits you will be entitled to and we can assist with completing the application forms.
Advocacy
If you would like someone to accompany you to a hospital visit, or to a school review, we would be happy to do so.
At other times you may just like to know what your rights are. We are also happy to provide information to schools, colleges, universities, or employers so that they have an understanding.
Social Needs
Advice and counselling on planning for the future, building personal relationships or responding to social barriers that may be encountered.
Leisure & Recreation
We provide day trips, fun days and conferences for both junior and adult users.