Lymphoma

Dealing with health professionals

People who were treated in the National Health Service (NHS) often expressed surprise at how good their care had been. Nearly everyone we talked to was full of praise and admiration for the staff who were routinely described as wonderful, brilliant, fantastic, or marvellous. Staff were praised for being sensitive, caring, understanding and approachable as well as happy to talk and explain things. Feeling trust and confidence in the team really matters to many patients, and staff who allowed their patients time, gave reassurance and helped them feel safe when in the hospital, were greatly appreciated. Some said they had developed really good, friendly relationships with their specialist over the years. Nurses were often praised for their knowledge of chemotherapies and side effects, their patience, friendliness and ability to remember their patients. 

Although most people described good communication with doctors and nurses, insensitive communication had sometimes caused misunderstanding and anxiety. Some senior doctors came across as arrogant or patronising, and one man commented that although the NHS may need some doctors who are very clever but don't have good human skills, they should stick to what they do well and leave the human part to those who can do it. A woman who didn't feel like eating after her chemotherapy said that she had been told by a nurse to 'eat that up otherwise you'll be tube fed'. Another woman said a nurse accused her of pulling the vacuum bottle off her drainage tube when it had come off by itself. One man said he preferred the more personable approach he had experienced from the more junior doctors, another that he always tried to break down professional barriers by making friends with his doctors and nurses.

A woman diagnosed at age 16 reacted very badly to being told she had cancer and subsequently referred to cancer as 'Trevor' and chemotherapy as 'Fred' and was grateful to her specialist for going along with that convention. One young man had found it easier to talk to the nurses than the doctors because they were nearer his age and shared his language and interests. 

A few people said that professionals had made mistakes. A woman said she had to stop a nurse giving her the wrong dose of medication. Another was told that she was going blind when she wasn't. A man was wheeled through dusty building works in the hospital basement when he was very vulnerable to infection. Others were concerned about hygiene. A woman said she did not see nurses cleaning their hands between dealing with different patients. A woman who spent time in isolation while having high dose chemotherapy before a stem cell transplant said she had to share toilets with other patients and that the cleaners did not appear to take special measures when cleaning her room. Other concerns included lack of support from staff and complicated administrative arrangements at hospitals, and frustration at having long waits in clinics for treatment or results. A man was irritated that his doctors changed their minds about whether or not he was in remission. Another would have liked more time after his diagnosis to digest the information he had been given before being rushed off to bank his sperm.

Most people were treated in the NHS but some had aspects of their diagnosis or treatment privately either to avoid long waits or to obtain drugs not available on the NHS. One said that he wasn't treated privately because he was told the private sector did not have the skills to treat lymphoma whereas his local NHS hospital was a centre of excellence. Those who had experienced both the NHS and the private sector said the main differences were in the speed of referral and investigations, in the hospital environment and in the availability of private rooms.

Some people had been offered counselling and most found it useful to deal with their feelings, in particular to help them accept the illness, to be given permission to feel unhappy, to realise they weren't alone, and to deal with feelings of abandonment on being discharged from hospital. Not everyone got on well with their counsellor. Some people saw themselves as 'copers' and felt they did not need counselling. A man who said he had been too proud to take up the offer, believing he could cope with his feelings, suffered personality changes which ultimately wrecked his marriage. With hindsight he believes he should have had counselling. Another said that he hadn't been offered counselling, and although he knew where to get it he didn't feel able to ask for it.

Few people talked about having contact with their GP once they were under specialist care. Some suspected that their GP did not know much about their illness, but one woman's GP practice seemed to have made the effort to learn more about her condition over time and she developed a good relationship with them. Another woman praised the good communication between her hospital and GP, who met her regularly throughout her treatment to find out how she was and helped her to manage getting back to work.

Many people we talked to stressed the importance of good communication and of health professionals remembering that we are all human beings 'not just patients'.

Last reviewed February 2016.

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