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What to expect at your treatment centre

What is the difference between a haemophilia centre and a comprehensive care centre?

Simply put:

  • a haemophilia centre is where you go for care of your bleeding disorder
  • a comprehensive care centre (CCC) has the resources to cope with more complex treatment issues as well as routine care.

Haemophilia centres are usually smaller, sometimes treating only a few people in that area, which means that they often don’t have a complete range of specialist treatment. This is why it’s important to ensure that, depending on your severity of bleeding disorder, you visit your CCC for regular reviews, or that your haemophilia centre is part of a network of centres that work closely with your CCC. There are currently 22 CCCs in the UK and about 64 haemophilia centres. 

What services do the centres provide?

The services you should expect to receive at your haemophilia centre are:

  • diagnosis of  inherited coagulation disorders
  • treatment monitoring
  • 24-hour emergency access and treatment for people with bleeding disorders
  • clinical advice for patients and families
  • support for home therapy programmes
  • participation in quality control and audit schemes.

In addition to this routine care, your CCC can also provide:

  • genetic counselling and diagnosis/testing
    • a 24-hour advisory and response service for haemophilia centres, GPs, dental surgeons, hospital doctors, patients and families 
    • counselling and support services (non-genetic), social work support and welfare advice
    • specialist care such as: children’s care, obstetrics/gynaecology, physiotherapy, dentistry, rheumatological and orthopaedic follow-up and intervention
    • specialist support for people with inhibitors
    • participation in clinical research and trials
    • education programmes for healthcare professionals, patients and families including home treatment training programmes, and home and school visits where appropriate
    • co-ordination of home delivery services.

Who staffs the centre and who will I see?

Most haemophilia teams are made up of a group of healthcare providers who have different roles in co-ordinating your care. These include doctors, nurses, physios and counsellors, plus administrative staff like data managers and secretaries/receptionists.

Depending on how your centre works, the way you contact your team will vary.

  • The nurses are usually the people to contact for most issues: they co-ordinate clinics, have access to all members of the team and can smooth the way for you. They will also be the key people in supporting your treatment at home, helping you with your infusion techniques and liaising with home delivery companies. They can also talk to other healthcare providers like your GP to support you at home and in other hospitals/clinics you may attend.
  • You can often contact the physio directly when you have bleeds and aches and pains. They can assess the whole of your muscle and skeletal systems and may identify issues that aren’t haemophilia related, and if needed refer you for treatment for those too.
  • If you are on home treatment, delivered through a home delivery company, it’s also a good idea to find out who co-ordinates the home delivery services for your centre – it may be one of the admin team or a nurse. This will be the person to contact if things go wrong between you and the delivery company.

Where are the other centres in the UK?

If you’re going to another part of the country, on holiday for example, it’s always good to know where the nearest centre is. Find out where the nearest centre is to where you are going here.