Paediatric Services

Information for first clinic visit

As part of the national newborn blood spot screening programme all babies in England are offered screening for sickle cell disease when the baby is five to eight days old. Screening for sickle cell disease is just one of the conditions tested for on the blood spot programme.

As part of the sickle cell screening programme other diseases such as Thalassaemia major may be identified but testing for this is not the aim of the screening programme and the laboratory techniques that are used may miss babies with other disease states including Thalassaemia major. Therefore pregnant women known to be at-risk of having a baby with these other diseases are advised to request testing of their baby as soon as possible after birth, ideally before the baby leaves hospital.

Babies identified with a disease such as sickle cell disease and beta Thalassaemia major are referred to a Consultant Haematologists or Consultant Paediatrician for specialist follow-up, for babies living in Brent and Harrow care is provided at Central Middlesex Hospital.

Specialist Sickle Cell and Thalassaemia Clinic

The specialist clinic is held weekly for newborn babies and children up to aged sixteen years; referral to the clinic is done generally through the national neonatal screening programme, via the GP or from a doctor or specialist at another hospital, Centre or in another area of the country.

Clinic Days Clinic Time
Tuesday 2pm – 5pm

To book or cancel a clinic appointment contact, the clinic clerk based in the Haematology Department, Tel: 020 8453 2292

The clinic is run by a multidisciplinary team of professionals which include doctors, specialist nurses, clinical psychologist, social worker, healthcare assistant, clinic clerk, and the phlebotomist (person taking blood), all working together to provide effective care for patients and their families.

At each clinic appointment the patients will have a number of tests done which include checking their blood pressure, temperature, oxygen carrying capacity, urine and weight measurement; they may or may not have bloods taken for testing. Any deviation from the normal is noted and if necessary action taken; this may include referring the child to another specialist.

During this time the child’s parents and the child are given an opportunity to meet each member of the team to discuss any issues which may be of concern to them. The specialist nurse will use this time to repeat information about genetic inheritance, various aspects of the disease, care and management of the child’s condition at home, in school, in the community. Emphasis is placed on how to prevent acute illness and limit complications from occurring.

DDuring clinic visits assessments are made of the child’s health and well being both physically, mentally, emotionally, psychologically and socially. The parents and older child are educated about the condition and offered on-going support. During the clinic session the patients will meet other parents and this gives them the opportunity to share experiences and ideas and offer each other support if they wish.

At end of their clinic appointment the patient will be given a follow-up appointment, if there are no complications this is usually for six months later however the frequency of appointments depend on how the illness is affecting the individual patient.

Home Visits /Community Care

Regular home visits by the Specialist nurse is very crucial when the child is newly diagnosed in order to support them through what is often a confusing period of their lives. During such home visits the specialist nurse conducts an assessment of the child and family needs, educate the family about the disease, how to manage the condition and how to prevent illness and complications. A home assessment will enable parents to identify the issues that need to be addressed in order to look after their child for example an environment that is clean, adequately warm, un-infested with vermin and suitable for a person with these genetic disorders of haemoglobin will prolong their lives and prevent complications.

Home visits give parents and families the opportunity to ask about different aspects of the condition and in an environment where they are more likely to feel relaxed, uninhibited and unrushed compared to clinic consultations.

Home visits are also conducted to provide clinical care when for example a child is starting home treatment of Desferal injections for iron overload; parents are often anxious about giving such treatment and need guidance, training and support.

Frequency of Contacts / Home Visits

The first visit by the specialist nurse is usually to inform the parents of the initial diagnosis made on the newborn blood spot screening and to offer to re-test the baby in order to confirm the diagnosis. Parents are informed of the genetic condition that is suspected, given information about the possible clinical nature of the condition, what they should do to care for the child effectively and as much as possible how to prevent or limit complications from occurring.

The national standard states that where a child misses just one clinic appointment the child must be followed up in order to ensure that the child receives all the necessary medical care and follow up.

The frequency of contacts either in the out-patient clinic or through home visits depend on the child’s individual needs.

The minimal recommended contact / home visit is:

  • Newborn to retest the baby to confirm the diagnosis
  • Follow up visit to confirm the diagnosis
  • Six weeks contact
  • Three months contacts
  • Six months contact
  • Nine months contact
  • One year contact
  • Then annually there after

Where there is a health or social need the frequency of contact may vary.

In-Patient Hospital Management

Because they are at high risk of getting infection parents of children with sickle cell and thalassaemia try to manage their child’s illness at home as much as possible and only bring the child to hospital when they are very ill or the illness cannot be managed at home safely, for example, if the child needs stronger pain medications or investigation of the cause of their acute illness.

All children with sickle cell, thalassaemia and related conditions who are registered with the NW London Hospitals NHS Trust attend Central Middlesex Hospital. During an acute illness the majority of patients are admitted to hospital via Accident & Emergency department to the Rainbow Children’s ward which is a dedicated children’s unit.

Name of Ward Telephone No. Visiting Times
Rainbow Children’s Ward – Ground Floor 020 8453 2039 12pm - 8pm

Parents may be able to stay with very young children when they are in hospital and they have open and unrestricted access for visiting their child of any age.

On one of the first few visits to the out patient clinic parents are usually taken to the ward for an informal visit, to meet some of the dedicated staff. During that time they get to know the ward and are able to ask questions about the ward routine.

Specialist Paediatric Team:

  • Consultant Haematologist  -  Dr. Gavin Cho ♦
  • Consultant Paediatrician  -  Dr. Michelle Afif ♣
  • Senior Specialist Nurse (Community)  -  Jacqui Bowyer ♥
  • Senior Clinical Psychologist  -  Dr. Kofi Anie ♥
  • Other Senior Specialist Doctors  -  ♦

Please note:

♦   These individuals are based in the main section of Central Middlesex Hospital. To speak to any of them for information or advice contact, Tel: 020 8453 2112 / 2113.

The department is open 9am – 5pm

♣   This individual is also based in the main section of Central Middlesex hospital. To speak to her contact her secretary Tel: 020 8453 2088 / 2311 / 2121.

The department is open 9am – 5pm

♥    These individuals are based at Brent Sickle Cell & Thalassaemia Centre. To speak to any of them for information or advice contact, Tel: 020 8453 2050 / 2052.

For babies and children’s services ring the Brent Sickle Cell & Thalassaemia Centre and ask to speak to the on-call specialist nurse.

For adult services ring the Brent Sickle Cell & Thalassaemia Centre and ask to speak to the on-call specialist nurse.

Opening Hours: 9am – 5pm

If health advice is required out of office hours patients should contact NHS Direct on Tel: 0845 4647 or visit their website www.nhsdirect.nhs.uk