Annual Report
Service Provision with outcomes
This year has seen the Project achieving targets set out within the business plan and also identified in agreement with funders. Effective utilisation of resources has meant that the Project has been very productive in delivering service provisions outlined.
However, the latter part of the year has been overshadowed by the uncertainty facing the Project in terms of funding stability. Where resources could have been utilised more effectively elsewhere, staff have focused resources on preparations for prospective and existing funders.
Carers and families of individuals with a major sickling disorder have
received continued support from the Project. Eighty people are
registered with the Project; of those 72 have a major
sickling disorder and eight have other haemoglobinopathies.
Of the 1436 referrals processed by the Project we detected 176 thalassaemia carriers, 197 sickle cell carriers. 238 were results of new born babies and the remainder were either non-traits or those requiring further investigations in order to give a conclusive diagnosis.
The project receives many different types of referrals and assesses the types of appropriate support required. The table below outlines the many different haemoglobin types we receive and process.
110 referrals are being processed each month
As we are involved in a comprehensive screening service, the Project in conjunction with consultants and the Haematology Department are able to review existing practices adopted by the Project in order to provide the most effective screening service.
The Project receives four main type of referrals from the Haematology Lab, which include neonatal (cords), Antenatal (pregnant mothers), Others (adults and pre-operatively) and those requiring further studies (molecular and iron replete).
Some of the main objectives of screening are:
To detect carriers.
To identify couples at risk of having an affected child.
To offer couples an informed reproductive choice.
To increase community awareness.
It would appear there is a 10% increase in referrals being processed by the Project this year, this could be due to the level of education and raising awareness activities that we have performed.
Number of carriers identified from 1st April 1999 – 31st March 2000 = 371
The table below gives a breakdown of referrals assessed and processed by the Project, and who have been confirmed their carrier status. They have all been offered an appointment for counselling from the Project and any additional support as may be required.
480 individuals have received counselling.
Counselling can be offered on three aspects:
Genetics (diagnosis and risk factors),
Health and Social (effective care and management)
Psychological (coping strategies).
The Main Focus of counselling is to ensure that:
Individuals at risk of haemoglobinopathy have full access to appropriate information.
Provisions available for one to one counselling sessions reinforce written information.
Appropriate language and understandable terms are used.
Liaison with other professionals on counselling issues is undertaken.
Counselling is provided irrespective of cultural backgrounds and ethnic customs of families.
Service Users have stated the following benefits after counselling:
" I have been explained everything I needed to know, and I have been made to feel very comfortable".
"I have been reassured about how it can affect me".
" I am very glad I came to the session, after the explanation I felt more aware".
Nine sessions have been provided to health professionals (270 students).
Sessions conducted this year have primarily been targeted at health professionals to include midwives, mental health and child branch students. The aim is to ensure that professionals that interact with individuals have a clear understanding and awareness of haemoglobinopathies including recent advancement in diagnosis and treatment. It also assists them in understanding the importance of the holistic approach in care.
Students have stated the following benefits after the training session:
"Good, interesting and beneficial to practising staff"
"This session gave a good overall picture and sound insight into this area".
"A very interesting and informative lecture, raised some good issues".
"Excellent teaching style, very professionally presented".
Nine school workshops (290 pupils, school teachers and nurses)
Of all the individuals living with a sickle cell disorder and are registered with the Project, approximately one third are children. The workshops encourage pupils, schoolteachers and others to have a clear understanding of the disorder and how it can be managed. Increased knowledge reduces misconceptions and prejudices and enhances the management of the disorder. An information package was produced specifically for the children, for which the feedback was very positive.
After the sessions teachers requested that these lessons are conducted on an annual basis, this year we were fortunate in securing a grant ‘Anchoring the Voluntary Sector’ from the Local Authority enabling us to deliver these sessions. The Project will only be able to conduct further sessions if we are able to access appropriate funds. The Project liased with various agencies when establishing the package to ensure the appropriateness of it’s contents.
Children and teachers gave their opinions on the workshops as follows:
"The children participated and were involved in the discussion. This helps them to focus more. The lesson was pitched just right for children to enjoy and learn".
"I liked watching the video and learning about sickle cell and what you have to do if you have sickle cell".
"I learned how to keep healthy and you can join in with the rest of your friends".
16% of the services delivered by the Project were home/hospital visits to clients that have either been admitted to hospital due to ill health or requested support at home from the Project. Intervention from the Project ensures effective management of the condition, assessment of treatment given and monitoring of care received whilst in hospital.
Of the 80 individuals living with the disorder registered with the Project, 17 core sufferers attend hospital as in-patients on a regular basis; the remainder are educated to effectively manage the disorder at home. Intervention from the Project has identified:
The reduction in the length of stay in hospital during periods of ill health.
Effective management of the disorder has assisted individuals to maintain their condition at home after hospitalisation.
Liaison with healthcare staff has reduced other complications being developed through identifying effective analgesics/treatment.
Home visits are generally requested when individuals are not able to attend the office following a medical concern. Home visits enable individuals, family members and the carers to openly discuss issues affecting those living with the disorder.
Seven individuals have requested support around social issues ranging from employment, financial constraints, education and housing. As clients often have hidden disabilities, they may require assistance in gaining additional support and appropriate service provisions that may be necessary.
The counsellors have successfully networked and obtained support in the following areas for the affected individuals and their families: -
HOUSING
Providing support and information to housing providers when assessing housing requirements of people with sickle cell.
EMPLOYMENT
Liased with employers to explain the special needs of people with sickle cell disorders.
EDUCATIONAL
Liased with teachers to help them understand the needs of children with sickle cell.
DISABILITY LIVING ALLOWANCE
Provided supporting evidence to adjudication and social workers to enable people to access entitled benefits.
WELFARE BENEFITS
Liased with appropriate staff and applied to funding sources and various agencies to obtain financial assistance in purchasing goods i.e. electrical household items, clothing and furniture.
All telephone calls, visits, letters of correspondence and contacts are recorded on the database, enabling the Project to monitor and assess the type of enquiries we are frequently receiving and review whether there needs to be a change in practice / services to effectively deal with all requests adequately.
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