• Topic
• Long term health conditions >> Advice to doctors and nurses >> Advice to doctors and nurses

Messages to doctors and nurses

• Clip
• Long term health conditions >> Women 16-18 >> Mica - Interview 16 >> Tell young people everything they need to know about sickle cell.

Mica has lived with sickle cell anemia since birth. Her Mum and her brother also have the condition. Her mother has played an important role in helping Mica and her brother to develop a positive attittude towards having sickle cell anaemia. Mica says that she now feels in control of her condition.

• Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> Health workers need to be gentle and to allow plenty of time for the consultation.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.

• Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Be aware teenagers will lie to you about taking medication but you just need to nag, nag and nag. Teenagers will grow out if it.

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.

• Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> Look at things from the individual patient perspective. Not all CF patients are the same.

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.

• Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Doctors should know more about ME because that is the first person you go to when you are ill. Young people suspected with ME should be referred to so

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.

• Long term health conditions >> Women 16-18 >> Lucy - Interview 05 >> Teenagers need regular and frequent appointments. Doctors need to ask more questions about how you are controlling your diabetes.

Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.

• Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> Listen to what young people are saying but also listen for what they are not saying. Ask questions about sensitive or embarrassing issues.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

• Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> It is hard to communicate with doctors because you are worried. Doctors should recognise how difficult it is for us to talk to them and not judge us.

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.

• Long term health conditions >> Women 19-23 >> Katie - Interview 23 >> Eczema is not a superficial or just a cosmetic issue. It affects how young people feel about themselves.

Katie was diagnosed with chronic eczema at the age of 11 but her eczema began to get worse in her teen years. She has had lots of different treatments for her eczema and has learned from experience what works and has improved her symptoms. She said that sleep is important as well as drinking plenty of filtered water.

• Condition
• Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

• Long term health conditions >> Women 24+ >> Nicola - Interview 13 >> Make sure that young people know what help is available and direct them to the right places.

Nicola has moderate asthma and needs to take her inhaler everyday to keep her symptoms under control. She does not get many asthma attacks now, but is prone to developing bronchitis which can last for up to a week. Nicola recently saw an asthma nurse and found it most useful. It provided an opportunity to discuss her asthma and treatment in detail.

• Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> She divides consultants between the authoritarian and the dismissive types. She prefers her GP because she can talk to him on a more personal and inti

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.

• Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

• Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

• Long term health conditions >> Men 19-23 >> Rollo - Interview 11 >> Says that doctor-patient relationship is difficult because doctors are used to treating your illness but in terms of ME it's not the case and to recom

Rollo thinks that what triggered his ME/CFS was an overdose of vaccinations that he had received at school prior to travelling to Asia. Following this he started having joint pains and became very emotional. He was diagnosed with ME/CFS by an 'alternative practitioner' a few years after getting ill. Says that ME/CFS affects different people in different ways and that doctors should learn to recognise that.

• Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Her diabetes and cystic fibrosis require a very specific treatment. She finds that apart from her medical teams other doctors find it difficult to und

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.

• Long term health conditions >> Women 19-23 >> Annette - Interview 31 >> Her doctor said that strobe lights could cause a seizure. When she goes to clubs she tells them about her epilepsy and they usually do not use the str

Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.

• Long term health conditions >> Men 19-23 >> David - Interview 08 >> He has seen doctors and nurses for so many years now that he understands a lot of the medical terminology and if he doesn't he asks them to translate

David has had twenty-seven operations in twenty-three years - the main ones including knee and hip replacement, leg straightening and spinal fusion. This meant that he has missed a great deal of schooling but he has always been determined to continue with his education. He finished his GCSE's, did his A' levels and has recently finished his university degree.

• Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to discuss this with her doctor.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

• Long term health conditions >> Women 19-23 >> Sara - Interview 27 >> She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave her another medication that she could accept.

Sara was diagnosed in 1990 with Juvenile chronic arthritis. She has had a finger tendon repair & a hip replacement. Current medication Anti-TNF Humira injected 2/month, indometacin, co-codamol & Lansoprazole. Says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it.

• Long term health conditions >> Women 19-23 >> Jodie - Interview 18 >> Finding out about her life expectancy made her not to want to do her treatment but the support and 'nagging' from family, friends and doctors helped h

Jodie has cystic fibrosis (CF) and was diagnosed with CF related type 1 diabetes in her early teens. Of the two conditions she finds her diabetes the harder to control particularly because she has a very active life. She finds that the specialist care she received is brilliant. She remains thankful for all the nagging she got from her Dad and her children's consultant.

• Long term health conditions >> Women 19-23 >> Elizabeth - Interview 01 >> She went through a phase of not wanting to take painkillers for her scoliosis but found the pain unbearable.

Elizabeth was diagnosed with scoliosis at the age of 16. She now works for a Department of Health funded project. She says that as a teenager she 'rebelled' against her condition and stopped taking her painkillers. Her attitude now is to work with her condition rather than against it. She takes regular exercise and does a lot of walking.

• Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> His mother suspected that something was wrong because he used to fall down a lot. The doctor (in Pakistan) dismissed her concerns and told her to have

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

• Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> Her father has epilepsy so she grew up with somebody with the same condition but her own diagnosis came as a shock to her. Feels she wasn't given enou

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

• Long term health conditions >> Men 24+ >> Clint - Interview 26 >> The doctor didn't make him aware that in 3% of the cases HIV patients develop AIDS much earlier than the predicted ten years after contracting the vir

Clint was infected with HIV at the age of 17 from a partner and, at the time he lacked any knowledge of HIV. Clint rapidly developed the symptoms of the AIDS defining illnesses. Although it was initially suspected he had cancer (a common kind of presentation for AIDS), he in fact had a positive HIV result.

• Long term health conditions >> Women 24+ >> Catherine - Interview 02 >> She lacked basic information about epilepsy and its treatment. It was only when a new doctor changed her medication that she found out more.

For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.

• Long term health conditions >> Women 24+ >> Nicola - Interview 13 >> Thinks that people should be given written information when they are diagnosed and also have opportunities to get more information as they grow older.

Nicola has moderate asthma and needs to take her inhaler everyday to keep her symptoms under control. She does not get many asthma attacks now, but is prone to developing bronchitis which can last for up to a week. Nicola recently saw an asthma nurse and found it most useful. It provided an opportunity to discuss her asthma and treatment in detail.

• Long term health conditions >> Women 24+ >> Miriam - Interview 07 >> Her mum found an internet group for young people with ME. She felt scared to ask the GP for information and feels that her GP had no idea what to tell

Almost ten years ago Miriam was diagnosed with glandular fever and given three courses of antibiotics. Her symptoms didn't improve and she couldn't continue with her university course. It was a homeopathic doctor who suggested she might have developed ME or chronic fatigue syndrome (CFS). It has taken her nine years to feel better again. She says that pacing and the acknowledgement of limitations are important tools for mending.

• Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> It can be very reassuring to hear that others have had similar experiences - whether they are positive or negative. Her GP has emailed her with articl

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.

• Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

• Long term health conditions

Publication date: October 2007 Last updated: February 2012

Review date: February 2014

 

Various long-term health conditions can occur in young people. We interviewed 30 young people about their experiences of different chronic illnesses. Select from the key topics below, choose from the full list of topics on the right hand side of this page, or explore all the interviews by clicking on people's stories below.

 
Sophie says: “I've had a good weekend despite my lungs not feeling too good. My boyfriend's training to climb Mount Kilimanjaro so we have been hiking!”
Join the Long term health conditions discussion on MyYouthhealthtalk

• Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> When she was 14 her doctor explained that women with CF could have children. Feels she was a little young for this conversation but was glad to know a

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.

• Long term health conditions >> Women 19-23 >> Kate - Interview 19 >> When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to upset her mum but found talking to others with CF rea

Kate was diagnosed with Cystic Fibrosis (CF) when she was 4 years old by a new consultant who spotted the symptoms straight away. Previously, she had been misdiagnosed with other conditions such as asthma and a milk allergy. Kate has very few CF related symptoms and although she has had the odd chest infection, she has never required intravenous antibiotics.

• Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> He was taken into hospital as an emergency, unable to breathe. His parents were told that it was time for him to die.

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

• Long term health conditions >> Men 16-18 >> Hassan - Interview 30 >> His father became angry with the doctors when told that there was nothing more they could do. He insisted that his son be transferred to another hospi

Hassan has Duchenne Muscular Dystrophy (DMD). Hassan was born in Pakistan but the family has relocated to the UK because he needs specialised medical care. With the help of his home tutor Hassan is writing a story about his experience of living with DMD. Hassan's message to other people living with a chronic condition is never to give up.

• Long term health conditions >> Women 16-18 >> Sarah - Interview 29 >> Until she was 13 she did not think that plastic surgery would be possible. She found out that it was when she saw a specialist in London.

Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an

• Long term health conditions >> Women 19-23 >> Sophie - Interview 15 >> She was feeling healthy but started to cough blood. Her doctors decided to conduct a procedure called bronchial artery embolisation.

Sophie was diagnosed with cystic fibrosis when she was 8 years old. She was taught by her parents to do all her own medications and treatments and encouraged to do sport. She is the Social secretary for her university Netball Cub. Sophie has a positive approach to her condition and says that she lives life to the full.

• Long term health conditions >> Women 24+ >> Lynn - Interview 28 >> Has not wanted to attend a support group. Really appreciated the care given by a trainee at the hospital and her GP.

Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.

• Long term health conditions >> Talking to doctors and nurses >> Talking to doctors and nurses

Talking to doctors and nurses