This is a patient-centred service which delivers quality care to all our patients and their carers. We aim to foster optimum health and wellbeing in all our patients. We recognised that a holistic focus involves “all that the patient is and wants to be”. This calls for a multi-dimensional approach in which we co-operate with other agencies. We deliver our service through counselling, education and continued support and advocacy in the centre, the home, the hospital and the community.
We understand that the needs of our users can be complex and we work hard to ensure that we meet the needs of our patients.
We work across many areas including clinical, genetics, disability, social, psychological and diversity issues.
In addition our team act as a key resource and work with all groups across primary care, voluntary, secondary care, community and local authority, to ensure the best outcomes for our patients.
The MSCTC service is free and confidential and provides:
- Screening for these illnesses and disorders and arrange specialist follow-up counselling
- Genetic counselling (for haemoglobinopathy e.g. sickle cell and thalassaemia)
- Prenatal counselling
- Domiciliary visits and assessments
- Clinical Psychologist for children
- Phlebotomy service
- Expert patients programme (Staying Positive)
- User group forums
- Promotes self management
- Training and clinical support and supervision to Link Health Visitors
- Benefits advice
- Local antenatal and neonatal screening programmes
- Consultant newborn haematology clinic
- Nurse led clinic appointments for those affected by the disorder and traits
- Referral to other agencies if required
- Structured educational programmes & health promotion e.g. talks to schools
- Teaching of students and Health professionals
- Information dissemination such as leaflets, booklets, posters, DVDs etc.
- Information of voluntary support groups
- Expert advice to other health professionals
- Drop-in services
Sickle Cell Society: http://www.sicklecellsociety.org/
BBC site that reflects the lives and experiences of disabled people.
Healthtalkonline lets you share experiences of health and illness.
Awards / Recognitions:
The service was recently audited/peer reviewed as part of Central Manchester University Hospitals NHS Foundation Trust children’s services. The service was described as excellent.
Received a gold Clinical Governance award 2009 and 2010
The service is supported by a multidisciplinary team comprising of the following:
Service Manager and Lead Haemoglobinopathy Specialist Nurse
As Head of Service her responsibility is to manage the Sickle Cell & Thalassaemia Centre.
Specialist Haemoglobinopathy Nurse Counsellors
Marilyn Burton; Doris Dennis, Marcia Oliver
The counsellors provide screening and counselling for the haemoglobinopathies, and genetic counselling and anticipatory care for women and their partners prior to starting a family. For the affected patients, they provide social and psychological support, as well as education for patients, parents, professionals, educational institutions, child minders and the community at large. They also provide liaison and advocacy with multidisciplinary services within the NHS, Social Services and voluntary organisations.
Specialist Haemoglobinopathy Midwives
Waheeda Abbas, Marilyn Burton, Jane Raddats;
Waheeda, Marilyn and Jane provide screening and counselling for haemoglobinopathies as do all other counsellors, but they are also responsible for the care of women with Sickle Cell Disease throughout pregnancy.
Paediatric Haemoglobinopathy Homecare Practitioner
Sarah MacDonald is one of the lead nurses to the Children
Sarah and Marcia both provide education and support for the parents, case management for the children in their home, and training for schools and colleges. Marcia and Sarah can be seen in the clinic held weekly.
Clinical Psychologist (Children)
Dr Sonia Patel
Dr Patel works with patients in the St Mary’s Hospital and two day weekly for the centre. She follows up the children referred to her.
Angela Sampson; Diana Matthews
The day to day running of the office is the responsibility of the secretaries. They take care of all the administrative work. They are also the first point of call and all appointments are booked by them.
Acute Trust Hospital
Lead Consultant Haemoglobinopathy Adult
Dr Kate Ryan
Dr Ryan is responsible for the adult medical management. Her team will also look after you if you are admitted to the MRI and she is at the weekly clinic. The Team are also available for medical advice if you are admitted to other hospitals.
Haematologist lead Nurse Specialist
Kath is the Lead specialist nurse who works together with the consultant to manage the patients’ care in hospital or the day unit.
Social Worker (Adults)
Clinical Psychologist (Adults)
the psychologist works with adult patients in Manchester Royal Infirmary Hospital, part -time and follows up the adults referred to her.
Lead Consultant Haemoglobinopathy Paediatrician
The paediatrician is responsible for the children’s and teenagers’ medical management. He will look after the children if admitted to Royal Manchester Childrens Hospital, and runs a transition clinic with the adult team every 4 months.
Specialist Sister In Children’s Haematology Department
Tracey is a specialist sister who works together with the consultant to manage the children’ care in the Royal Manchester Children’s Hospital.
Social Worker (Children)
The specialist social worker works together with the consultant and specialist nurses / counsellors to manage the social care for the children under the Royal Manchester Children’s Hospital.