Have your say about services to support people affected by Sickle Cell and Thalassemia

The CCG is looking at the services and support for people in Wolverhampton who are affected by these two conditions. We are asking for your views so that we can decide which services and support we need to provide, and how they should be provided. There is a survey questionnaire that we would like you to complete, to help us make this decision.


https://www.surveymonkey.co.uk/r/PLD5VPY

(survey closes 21 August 2017)


We want your views

Some of the help and support for Sickle Cell and Thalassemia is paid for by the CCG. Some of it is paid for by other NHS organisations. We are only asking you about the help and support that the CCG may need to pay for.

We are asking for your views as patients and members of the public about what you think is important.


We would like to find out your views about:

  • The information that is available to the public about Sickle Cell and Thalassemia.
  • The advice and counselling that parents are offered as part of the screening process
  • The long-term support offered to people with the conditions

We also want to ask people who are affected by Sickle Cell and Thalassemia what they think is important to help them keep healthy and how that support could be provided. 

Some of you will have used the services which are available or know someone who has. We would like you to tell us your views about those services to help us decide which ones work best. 




How the NHS supports people affected by Sickle Cell and Thalassemia

There are quite a few different times when the NHS may need to offer people help and support about Sickle Cell and Thalassaemia.


Before birth
Because both conditions are passed on by parents, it is important that the risk of a baby being born with either condition is identified as soon as possible. The first step is something called antenatal screening. All pregnant women are offered a blood test (screening) as early as possible in their pregnancy. This test will find out if they have the trait for either condition. The test is arranged by the midwife looking after them. If the result is “positive” then the mother is offered counselling, support and advice on what to do. The baby’s father will also be offered screening. If both parents screen positive, or if it is not possible to find out whether the father also has the trait then, if the parents choose, they can ask the midwife for advice about further tests to find out if the baby will have the condition.

Following Birth
All new-born babies have a small sample of blood taken to find out if they could have any possible health problems. This would include finding out if the baby has Sickle Cell disease. This test cannot always identify if they have Thalassaemia. If the test identifies that the baby has Sickle Cell disease then they and their parents will be offered support from specialists in that condition. These are usually based at Birmingham Children’s Hospital. Because Sickle Cell disease reduces immunity to infections it is important that babies and young children with the condition have all their vaccinations done as soon as possible. They should also take antibiotics every day. If a baby is diagnosed with Thalassaemia they and their parents will also be offered support from specialists in that condition. They will need to have regular blood transfusions and take other medicines to keep them healthy. If the test identifies that the baby has the genetic trait for either condition this is recorded on their medical file.

Longer-term support for people with Sickle Cell and Thalassemia
People with Sickle Cell and Thalassaemia will continue to need some help, support and treatment for the rest of their lives. Because the conditions affect different people in different ways, some people will need more help than others to manage it. There are a number of very serious health problems that can affect people with the conditions. Quite often the condition may make another health problem worse than it would usually be. These might mean that someone needs hospital care. The help and support will include advice on how to prevent the need for hospital care if at all possible.

 

What are Sickle Cell and Thalassemia?

  • Both Sickle Cell and Thalassemia are conditions that affect the red blood cells which carry oxygen round the body. They affect  people in different ways and need different treatment.
  • Both Sickle Cell and Thalassemia are “inherited” or “genetic” conditions. This means that they are passed on by our parents and we are born with them. There is no real cure for either condition, so someone born with it will have it for life.
  • Some people are “carriers” of the conditions. They do not usually have any of the health problems that affect people with the condition.
  • Sickle Cell Disease is more common in people with an African or Caribbean family background.
  • Thalassemia is more common in people with a South Asian or Mediterranean family background. 

Further information on these conditions, their possible symptoms and how they can be treated are on the NHS Choices website:
http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx
http://www.nhs.uk/conditions/Thalassaemia/Pages/Introduction.aspx

There is also information on some charity websites :
http://www.sicklecellsociety.org/
http://www.ukts.org/

How the conditions are passed on:
Sickle cell and Thalassemia can only be passed on to a child if their parents either have the condition or are a carrier of the condition.
If both parents are carriers it is possible that their children may be born with the condition or born with the trait. It is also possible that they will be born with neither.
If one parent has the condition then all their children will be born with the trait. If the other parent is also a carrier then there is a higher possibility that the child will be born with the condition.
If only one parent is a carrier then it is possible that they might pass the trait on to a child, but there is no chance of the child being born with the condition.

Children and Young People
It is important that children and young people learn how to manage the condition to keep them as well as possible. They will be offered support from a number of services to help them manage the condition. This will include help from their GP, and from specialists in these conditions based at the local hospital. It will also include help from organisations working in the community. While they are very young this support and advice will be offered through their parents. 

Adults
Adults will be offered support to help them manage the condition and how it affects their everyday life and how to avoid the problems that might mean they need hospital care. This will include help from their GP, from specialists at the local hospital and from organisations working in the community.

There are a number of health problems that can be caused or made worse by the conditions as someone gets older. These problems might mean that it is difficult for someone with the condition to do what other people take for granted, for example, to go to work, and that means they may need more help.