Step 5 – ongoing care in primary and specialist care

At Step 5 you’ll start treatment. You’ll probably see your specialist team quite regularly to begin with, but your appointments will become less frequent once your team is confident that your condition is being well controlled.

You’ll need to go for regular blood tests at your GP surgery or the hospital. These will check how your condition is progressing and how you’re responding to treatment. Your GP will usually share some of your care with the specialist team.

Once your condition is under control, you and your team should review the disease and the impact it’s having on your life at least once a year.

If you have a problem or your symptoms flare, it’s important that you know how to access your team. You should have access to a nurse-led helpline number.

As well as the organisations listed below, which provide information specific to people at Step 5, you may also be interested in the following general information:

The Patients Association is an independent, national charity that highlights the concerns and needs of patients.

The Citizens Advice Bureau offers information on health rights, which covers what help is available through the NHS, patients’ rights, help with health costs, how to make a complaint, and health services for people abroad. 

The Direct Gov website details the support that may be available across a range of issues such as employment, transport and finances.

Most specialist teams have an advice line which is often run by the specialist nurse – make sure you know the number. Your GP is also an ongoing source of help and support.