Sickle Cell & Thalassaemia Support Project
Dudley Newsletter 2012/13
Welcome...
Hi everyone for those of you who do not know me my name is Alexis and I am the Community Development Officer for the Sickle Cell and Thalassaemia Support Project here in Dudley. The Project aims to help and support those individuals and their families living with or affected by Sickle Cell or Thalassaemia disorders. We hope to be able to empower these individuals and their families to positively impact upon their quality of life. We work very closely with the Haemoglobinopathy Nurse Specialist Marites Navarro to support, advise and improve the
health and well being of affected patients. In this newsletter I will be giving you a quick update of the last 6 months, the work we have been involved in and the support we have provided. If you are interested in finding out more or would like to get actively involved with the Project please do not hesitate to contact us on 01902 444076 or alternatively via email info@sctsp.org.uk You can also contact Marites Navarro on 07766 541721.
Find out more at
www.sctsp.org.uk
Housing: How can we help?
During this period the Community Development Officer has been working on a number of cases where housing has been the main concern. Housing can be instrumental to an individual’s health and wellbeing especially when living with either Sickle Cell or Thalassaemia disorders.
twitter #sicklecellcare
Damp conditions, lack of heating and drafty windows can all precipitate a Sickle Cell crisis. So it is important to make sure that the condition of your property is suitable to your current need and is ‘fit for purpose.’ Where this is not possible please do not hesitate to contact the Project. We will support you however we can to improve your property, and in extreme cases we may be able provide advocacy support to help you move to somewhere more suitable. Our aim is to improve your quality of life as a whole, working with you to find the best solution for you.
Cosmo Meal & Adult Consultation
With the massive changes that are happening currently within both the voluntary and statutory sectors, budget cuts and pressures to deliver a more focused service, we decided to consult with our adult service users to find out what services they would like us to provide. We decided that the best way forward was to put on an event and invite all adult service users from across all three areas. We understand that the needs differ from area to area which is due to the diverse nature of the communities we support.
In Wolverhampton we have a much higher number of Sickle Cell Disorder patients, whereas here in Dudley we have a balance of both Sickle Cell and Thalassaemia disorder patients, Walsall seems to follow the same trend as Wolverhampton. We managed to get service users from all three areas to attend but unfortunately no Thalassaemia Major adults could attend.
Find out more at
www.sctsp.org.uk
Cosmo Meal & Adult Consultation
The Project asked five specific questions about current services and proposed services as follows; 1. Has the Sickle Cell and Thalassaemia Support Project helped you in any way in the past, if yes how? 2. Do you feel the Project can improve its support to you, if yes how? 3. Are there any services/ products you are aware of for other conditions that you feel can be adaptable for Sickle Cell/ Thalassaemia, if yes how? 4. We are proposing to facilitate a service user lead support group would you be interested in attending?
twitter #sicklecellcare
5. Which other holistic therapies/services do you feel would be beneficial to you in managing your condition? If you would like to respond to any of these questions please do as we are always interested in hearing the views of our service users as they help to make our service better suited to you. There will be a blank space at the end of this newsletter which you can detach and return your comments, thoughts or ideas to the Project.
Children’s Activity Event & Meal
Every year we try to put on an event for our younger service users and their families, and this year was no different! The Project arranged a day of activity and fun for the young service users and their siblings. The Project took children from all three areas (Wolverhampton, Walsall and Dudley) to Bowlplex – Bentley Bridge where the children all had a game of bowling and even some of the parents got involved with the fun and laughter.
After bowling we went across to Chiquitos and all in attendance enjoyed a late lunch of Mexican cuisine. The event was fun and all the children enjoyed themselves but also had the chance to make new friends and acquaintances.
Find out more at
www.sctsp.org.uk
Making it Real in Dudley
‘Making it Real’ is the process which aims to change the way support is provided to adults and those who care for them. This is often known as ‘personalisation’ and is based around how people who use services and carers have said they want their support to be provided. From October 2014 anyone who qualifies for support from Dudley Metropolitan Borough Council will be awarded a personal budget by default, unless special circumstances apply. Personal budgets empower people to manage their own support in the best way to meet their individual needs. Support Agencies are available to give good advice and help plan support. There is a lot more information on Making it Real on our website www.dudley.gov.uk
twitter #sicklecellcare
Would you like to become a volunteer?
The Project has now started offering a new service for all adult service users from January 2013. The project focuses on the re-enablement of adult service users returning home after being discharged from hospital. The Project aims to formulate an individual discharge plan with the service user before they are discharged from hospital. This plan will then be implemented and actioned by all agencies involved.
Find out more at
www.sctsp.org.uk
The plan will be agreed by the individual receiving the services. This will be signed off by the individual when a particular element of the plan has been completed satisfactorily. The idea is that when an individual is discharged from hospital they are not always operating at 100% and may need extra support to help them get back on their feet i.e. they may need extra support to buy shopping, wash their clothes or even prepare meals. If you feel you could spare a few hours a week and would be interested in offering support to individuals living with Sickle Cell or Thalassaemia; please get in touch with Ravinder Raj at the Project on 01902 444076 or alternatively via email info@sctsp.org.uk