News

Invitation to
ANNUAL NETWORK STUDY DAY for SICKLE CELL & THALASSAEMIA
Wednesday 2nd July 2008
10am - 4pm

Bridge Park Community Leisure Centre
Brentfield Harrow Road, Stonebridge
London NW10 ORG. (nearest underground: Stonebridge Park station, Bakerloo line)

This invitation is to GPs, practice nurses, health visitors, head teachers, patients, carers and health care professionals. This is our seventh annual network study day, and patients have told us they found this coming together of a range of different people have helped improve their experience in accessing the care they need in the hospital and in the community.

Programme

Session 1:
How issues identified at last year’s study day were addressed, for example, psychological care, rapid care on admission, implementation of integrated care pathway, any side effects of medications on patients after a while etc
Session 2:
Group work and documentation of  burning issues
Session 3:
Panel discussion on equity of service provision in relation to iron chelation treatment; use of patient held records and the Health Impact Assessment report of the regional care support project of the Sickle Cell Society

To register please Tel: 020 8795 6748 and leave your name, and address or Email: mary.joyce@brentpct.nhs.uk for a registration form.

Patients & carers can make travel claims when they present a receipt.

Please read the network's response below:

Stroke Consultation Response

Sixth Annual Study Day

4th July 2007

9.30am to 1.30pm
Venue: Bridge Park Community Leisure Centre, Brentfield, Harrow Road, Stonebridge, London   NW10 0RG  
(By London underground, Bakerloo Line: Stonebridge Park Station)

INVITATION
Dear colleague

The NW London haemoglobinopathy network

The NW London haemoglobinopathy managed clinical network (MCN)  will ensure that the target set in the NHS Newborn Screening Programme is met: “there will be a new national linked antenatal and neonatal screening programme for haemoglobinopathy and sickle cell disease”(NHS Sickle  & Thalassaemia screening programme: www.screening.nhs.uk/sickleandthal)
Sickle cell disease is now the most common genetic disorder in England, affecting more than 1 in 2,000 live births. The birth prevalence in some urban areas may be as high as 1 in 300. Here in NW London, during the last quarter Oct-Dec 2006 alone, 29 infants were reported as affected by SCD or Thalassaemia through New Born Blood Spot Screening, and 842 were carriers needing genetic counselling.

To date, SCD & Thalassaemia have been managed exclusively by the acute sector. This has partly been due to the diseases being seen as a specialised condition for which general practitioners may have little knowledge or training. This cycle needs to be broken with clear instructions for parents on when to use primary care and the acute hospital. To achieve this, practical information needs to be given to the general practitioner e.g. dosages of medications, steady state values, and the information that has been given to parents about the condition and ways of accessing hospital care.

SCD & Thalassaemia should be considered as chronic illness with acute exacerbations that have far –reaching effects on education, family life, social integration and the emotional well being of the child, adolescent & young people and the family.

Community services & patient hand-held records

During this year’s annual study day, we shall be looking at how we are remodelling community services across NW London and liaising with the voluntary sector to ensure implementation of the UK care standards for sickle cell in childhood and for thalassaemia, and to evaluate the usefulness of a locally designed measuring tool (i.e. patient hand-held records) in helping provide practical information to GPs, and helping PCTs  audit the standards. 

Agenda & registration form
The registration form for the study day is HERE.

I would be grateful if you could pass this information on to colleagues who may also be interested in this event. We hope as many of you as possible can attend and that the programme reflects the variety of work programmes and issues that is important for people in London working in and around the area of haemoglobinopathy services and meeting the care standards.

Please complete your registration form & return by 7 May 2007 to  Carol Van Achter. Email: Carol.VanAchter@brentpct.nhs.uk           Tel:: 020 8795 6735

Yours sincerely,
Dr Mabel Alli, Network Coordinator
Public Health Dept, Brent tPCT, 116 Chaplin Rd, Wembley, Middx HA0 4UZ
Tel: 020 8795 6749 Fax: 020 8795 6751 Email: mabel.alli@brentpct.nhs.uk
Web address: http://www.haemoglobinopathy.org/

For more about sickle cell disease: http://www.sicklecellsociety.org
For more about thalassaemia: http://ukts.org

To patients and carers/parents of children living with sickle cell or thalassaemia

INVITATION

BY POPULAR DEMAND
The  NW London Haemoglobinopathy Clinical Network would like to invite you to their annual study day:

Date: Wed 4th July 2007
Time: 9.30am -1.30pm
Venue: Bridge Park Community Leisure Centre, Harrow Road, London NW10 (nearest underground station Stonebridge Park)

* There’ll be  talks from leading clinicians on the latest research and treatment for sickle cell disease & thalassaemia
* We shall discuss the sickle cell patient hand-held records and UK care standards
* There is opportunity for patients to share  their experiences and ask questions
* To register, call 020 8795 6735 & ask for Carol. An agenda will be sent to you.
* A good time awaits you all
* We hope to re-imburse your transport costs, when you present a valid receipt.