People with rare forms of cancer need care plans tailored to them

Care plans should be tailored to ensure people with rare forms of the disease do not receive sub-standard care, say experts.

Combined research by Macmillan Cancer Support and Public Health England’s national cancer intelligence network has revealed around 440,000 people have what are classed as less prevalent cancers. Two thousand people have tumours in the nasal cavity and middle ear, 5,000 people have tumours in the salivary glands and 6,700 have cancer of the anus.

There is concern the NHS is struggling to care for those with rare forms of the disease, who often have complex needs. Less common cancers still account for more than half the cancer deaths in England, Public Health England's head of clinical epidemiology Julia Verne said.

Rare cancers are more likely to be diagnosed following emergency admissions to hospital, a Macmillan spokesperson said. And one in five people with rarer cancers are not given information about support or self-help groups following their diagnosis.

Macmillan chief executive Lynda Thomas, said: ‘It is vital the NHS fully funds and implements the recovery package, a tailored support programme recommended in the cancer strategy for England. The recovery package includes a treatment summary that is sent to the patient’s GP so they can monitor any consequences of treatment, and offers access to education events to help patients spot signs of recurrence.

‘This will ensure people with cancer get the help they need before, during and after treatment and gives patients with rarer cancers the best possible chance of living well with their disease.’

Read more on the research here