Long term health conditions

Surgery and hospital treatments

Many of the young people with long-term conditions that we talked to had stayed in hospital for specific treatments or surgery. When there was a crisis in their health, some had been admitted to hospital as an emergency. Some of the young people have to get treated at hospital on a regular basis which meant missing out on school or time with friends and family. People talked about how their daily life is disrupted on these occasions and some said that they will do anything to avoid having to stay in hospital for treatment.

For people with kidney disease, dialysis can be vital. A teenager who had to spend a lot of time in hospital for dialysis questioned whether the hospital was the best place for this treatment. His mother had been trained to help him with his dialysis at home and he was hoping to be able to have a special room built to make this possible.

People who had spent time in hospital often spoke highly of the staff - especially the nurses who were frequently described as nice, friendly and helpful (See 'Getting on with your healthcare team'). When she came round from anaesthetic after major surgery, one girl told us how reassuring it was to see several nurses around her bed. Doctors and nurses often seemed to have made an effort to talk to young people in ways they could understand and to break news gently and appropriately. Sometimes people could see through these tactics - for example a young man had noticed that his doctors tended not to give him any news if they could not also find some good news to tell as well. Instead they waited until there was a bit of good news and gave both together. Having realised this he assumed that if he wasn't being told anything, it must be bad.

Preparation is often needed for major medical procedures. A young person with kidney disease told us about the 'work-up' she and her mother had to go through in preparation for a kidney transplant.

A few of the young people we talked to had been taken to hospital when their illness reached a crisis point during which their parents had been warned that their child might not survive. This was obviously very frightening for everyone and some parents reacted angrily because they didn't believe that everything necessary was being done to save their child. One young man said that his mother had been really cross with a nurse who inadvertently caused him pain. A young man with muscular dystrophy described how his parents reacted when his hospital doctors suggested that there was nothing more to be done.

Usually young people were able to have at least one of their parents around while they were in hospital. A girl whose mother decided to be her kidney donor had to cope without her mum immediately before and after her surgery - but she was reassured that her mum's operation had gone well before she went into surgery herself.

Most people know that they are not able to eat or drink anything in the hours before surgery but it can also be several days before you can eat normally after surgery. When things do not go according to plan this can mean an extended period on a 'very boring' diet. One young man told us that his mum had promised him that he could spend a whole month eating nothing but burgers when he came out of hospital. His parents also bought him a DVD player and a hundred DVDs which he said compensated somewhat for the unpleasantness of his hospital treatment.

When people come round after surgery they can find that they are attached to various tubes and 'lines' into and from different parts of their bodies. Depending on the nature of the operation they may have catheters that collect their pee (so they don't have to use the lavatory), lines for antibiotics, IV drips with liquid food or medicines, pain control etc. One of the benefits of being in hospital is that specialists can look after your pain control and give you more powerful drugs than you would be able to use at home. 

Doctors and nurses have to keep a close eye on people after surgery in case they develop an infection - one young man described what happened when he got peritonitis after his surgery.

Different doctors can have different views about how people should be treated. A young woman with a rare skin condition (called morphea) that affects the appearance of her face told us that the specialist she saw in London took a completely different view to the doctors at her local hospital. As a result, she is having a series of operations to her nose, cheeks and forehead.

There can be considerable expenses associated with being in hospital or travelling to and from hospital for treatments - some people found that they could reclaim expenses or, depending on their income, receive benefits (see our practical matters resources for links to advice about benefits and expenses).

Last reviewed July 2017.

Last updated April 2010.


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