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Appendix
These case studies have been developed by the Long Term Conditions Alliance Scotland to explore the realities and aspirations of real people living with long-term conditions.
Long-term condition case study 1: Fiona, a young person with complex needs
Fiona is 19 and six months ago left the residential school she has gone to for the past eight years. She is back living with her mum and dad and is feeling a bit frustrated. Her folks are great but they fuss a lot. Fiona would like to develop skills to work and live more independently so she goes to a resource centre for disabled people three times a week.
Although she is learning some new things, she finds the centre very different from school. The staff are not as supportive as her teachers and they don't always take time to understand what she is saying. She remembers her communication methods being talked about at a review meeting before she left school. At this stage it was agreed that the staff at the resource centre would have training. They also agreed to spend time with her at school to make sure that her voice would be heard. None of this seems to have happened and often Fiona thinks staff are pretending to understand her rather than taking time to get to know her. However, she is trying to persevere as she knows how important it is to keep talking so people around her tune into her.
Other support in terms of personal care is fine except when she has a bad seizure. The minor ones are ok, no one seems to panic about them. Sometimes they don't even notice. Fiona thinks they don't realise that her jerks are all part of epilepsy. The panic happens when Fiona needs to get her emergency medicine. This doesn't happen often but when it does staff don't follow her care plan and phone her mum instead. If they can't get a hold of her mum they phone an ambulance. This is worse as Fiona hates going into hospital. She especially hates it if there is no need to be there in the first place. She has spoken to her consultant at the hospital and he says he has done everything he can by making sure she has an emergency care plan and an up-to-date prescription.
All of this is making her mum worried which Fiona also hates as she fusses even more. No one seems to treat Fiona as a young adult. She thinks this is because she is disabled and that she will always be treated like a child. She thinks there is no point in telling anyone what her dreams for her future are as no one seems to listen.
Another thing that is happening for Fiona is that she needs to change her hospital care from the children's hospital to adult services. She's been waiting for months for an appointment. At this appointment she is due to meet the adult epilepsy specialist nurse ( ESN) who will introduce her to the consultant. The ESN from the children's hospital has agreed to go to this appointment with her. Fiona thinks they have forgotten about her.
Fiona's life could be better than this. Read on to see how the implementation of a strategy for long-term conditions could help make things better for Fiona.
When Fiona was planning to leave school and go to a resource centre, staff from the resource centre began working with her during her last six months in school. They came to visit her, spent time with her and her teachers learning about how Fiona communicates. They also learned about the best ways to approach Fiona's personal care. Part of this included training on administration of her emergency medication. The support staff at school showed the new staff Fiona's emergency care plan. They talked about Fiona's seizures and described what a serious seizure needing emergency medication looked like for her. The resource centre staff then understood the nature of Fiona's seizures and how to deal with them.
Back at the resource centre, staff still felt anxious about dealing with Fiona's seizures. To help with this the manager organised for the voluntary sector to offer epilepsy awareness training to the whole team. Everyone on the team learned a lot about the complex and diverse nature of seizures. Staff who were to be working directly with Fiona got extra training on the administration of emergency medication. At this training session the nurse trainer looked at the specifics of Fiona's emergency care plan and based this part of the course around Fiona's needs.
The speech therapist Fiona works with at the hospital also came with Fiona and trained staff on the best way to communicate with her. She knows Fiona well as she liaises with the school and also sees Fiona when she goes to the outpatients clinic.
Just before Fiona left school, everyone who is involved in her care and support from the children's hospital and school met with Fiona and her parents. They invited all the new staff who would be working with her in her adult life. Together with a facilitator from the voluntary sector, they helped Fiona develop a person-centred plan. This process helped Fiona express her wishes and desires for her future. For the first time she was able to say that she wants her own home at some point.
Fiona's plan is drawn up showing her goal of her own flat, a boyfriend and going to college. Next year she is going to talk about her longer-term goal of work. She would also like to have a baby. Fiona feels confident that she can get help to build up to telling her mum that one day. She now thinks people are listening to her.
After this meeting Fiona's mum and dad feel reassured that there is support there for their daughter with her health and social care needs. The main thing for Fiona's mum is the reassurance that she will get emergency medication in time. She knows how important, infrequent but vital this aspect of Fiona's care is. This was one of her main concerns when the time came for Fiona to leave school.
As Fiona asked for help to reach her goals, further support is organised though a voluntary organisation. This support is community rather than centre-based and focuses on helping Fiona gain independence in making decisions that will chart out her life path. This type of service is flexible and allows Fiona choose the areas where she needs to develop. As she is worried about the moved to the adult hospital, the first thing she works on with her support worker is to get an appointment sorted out. At this appointment her support worker helps her ask the questions that were worrying her. Together they take away information about the service and will work together to help Fiona ask all the questions she has at her next appointment.
Long-term condition case Study 2: John, a person in mid-life living with a long-term condition
John is 48 and started on new medication around six months ago, after feeling tired and run down for some time. He has been told to take tablets several times a day, to change what he eats and when, to take exercise every day and to stop drinking as much. He has also been told to lose weight. He got some leaflets at the beginning but it was a lot to take in. He isn't sure where they are now.
At work he is finding it difficult to remember the tablets and hasn't told anyone about his health problems because he believes that will change his opportunities in his career. He thinks it won't make a difference whatever he does as he has eaten the same diet as his workmates all his life. He can't imagine how to change now.
Meeting his friends after work for a drink is important to him as it is a way he deals with the stresses and strains and he is scared to lose that. His wife Elaine feels she is nagging him and keeps asking questions he can't answer. He used to look forward to holidays but can't see the point anymore. He has lost interest in most things, even sex. He can't bring himself to talk to anyone about this, even and especially his wife. Things are tense between them.
He needs regular check-ups now but they are during work time and it's difficult to get time off without telling his boss all his personal details. Sometimes at the clinic he feels he has let people down so he doesn't always go. He likes the people there but he finds he doesn't have the opportunity to ask the questions he would like to. He doesn't know where else to turn for help. Sometimes he feels very stuck; he needs to keep working but finds he has little energy. At times he has thought that life isn't worth living but is too ashamed to admit that to his family or anyone at all. He worries that his children will develop these problems too and feels guilty about this.
John's life could be better than this. Read on to see how the implementation of a strategy for long-term conditions could help make things better for John.
When John was diagnosed and started on treatment he and his family got information on his condition and treatment. He chose leaflets that interested him and looked at a website that was recommended. He was told how to get new information throughout his life whenever things crop up and his condition and life change. He and his family were told that this might include quality of life issues, e.g. travel, sexual health, and discrimination. They found it reassuring to know that other people had also had problems like theirs. He was also told that people can have an increased risk of depression and how to look out for this as well as where to get help.
John was offered an opportunity to attend a group that helped him set priorities for his health and believe that he can change things for the better. A self-management programme was offered along with a structured approach to education about his health problems and his treatment programme. The focus was on his priorities and how he can tackle them positively to maximise his quality of life. He also got information on the quality of care and support to expect, his test results and their implications and a key worker to contact if he has a problem.
He was offered the opportunity of flexible appointment times or drop-in services, after work or in different settings, for example close to work or in the more accessible town centre. John also received support and information to understand his rights in the workplace and where to turn for support if he needs advocacy advice or help.
John was informed of all potential services of support and information including support groups, lay mentors, help lines, web-sites and voluntary organisations and how to contact them.
When John met health professionals he was greeted and assessed as a person not as a medical condition and they also took account of emotional and social well-being. His healthcare professionals were up to date on condition-specific evidence-based care, screening and treatment for mental health problems such as depression as well as in empowerment techniques. They used active listening skills and because of this he also felt able to discuss feeling low and stuck. He was consequently referred to a counsellor who had skills in cognitive behaviour therapy as well as counselling.
John felt his team were working together with himself at the centre of the team, defining his own goals and priorities. He felt confident that he was able to improve his own health. He didn't feel a failure when things weren't so good and he knew who to talk to get support. His wife was also knowledgeable about his condition and able to support him constructively when he needed her to.
He attended regularly for follow up and negotiated time off work for this. His work colleagues were very supportive when he explained the support they could give him and the occupational health nurse was able to support his weight loss programme. He got information on health risks to his family from the voluntary organisation and enjoyed getting involved with a peer support programme; feeling that he was also benefiting whilst supporting others.
John's health and relationships improved with the right support, information and networks.
Long-term condition case study 3: Isa, an older person with a progressive condition affecting decision-making
Isa was in her 70s and living alone when she started to have difficulties with day-to-day activities. Her daughter Joan first became aware of problems after her father died suddenly. Joan became concerned about her mother's state of mind after her loss. She lived 80 miles away, but kept in close contact, phoning daily and visiting at weekends.
Joan was anxious that her mother seemed not to be eating properly, was forgetful and constantly losing things. She put it down to the bereavement, but when things didn't improve she suggested Isa see the doctor.
The GP was sympathetic and arranged for Isa to see a specialist for tests. The appointment was for a day Joan had to be at work, so Isa went on her own. The specialist told her what was wrong. She told her that there was no cure, and that her condition was progressive. She said some other things as well, but Isa was in a state of shock and couldn't remember anything beyond the bad news and that a social worker would be in touch. She went home with a prescription, but she wasn't sure what the tablets were meant to do.
Joan heard the news from Isa. She had only a vague idea of what the diagnosis meant and didn't know where to turn for information. The social worker did an assessment, but Isa told her she was coping fine - she didn't like to admit to what she wasn't managing. The social worker didn't seem to know all that much about Isa's diagnosis, but she arranged for meals on wheels.
Isa struggled to cope. For months Joan was on the phone to her five or six times a day, sometimes in the middle of the night, and visiting several times a week. It put a huge strain on her and her family. Isa kept forgetting to take her medication, and she didn't think it was helping. Joan asked the social worker for more help but Isa refused it because she preferred Joan to help.
Eventually the travelling got too much and Isa moved in with Joan, who gave up work to care for her full time. It was not a success. Isa felt she'd lost her independence and got frustrated very easily. Joan found herself losing patience because Isa was slow at doing things. It was easier just to do it herself. She was often angry with her mother, and felt bad about it afterwards. Isa felt useless and ignored and spent a lot of time sitting in her chair doing nothing. Isa's condition got worse and new difficulties came up every week. Neither Isa nor Joan felt they had anyone they could talk to about how to cope with the symptoms or with the effect the illness was having on their lives.
Things came to a head when Isa had an accident in the kitchen and there was a fire. Luckily no-one was hurt, but Joan decided she couldn't carry on. Isa moved into a care home. It wasn't what she wanted, but she didn't feel she had a choice.
Isa's life could be better than this. Read on to see how the implementation of a strategy for long-term conditions could help make things better for Isa.
When Isa started to have difficulties coping with day-to-day life after her husband's death, her daughter Joan suggested she see her GP. The GP was helpful and explained some of the possible diagnoses. He arranged for Isa to see a specialist.
Isa asked for an appointment at a time when Joan could come with her, which was no problem as the clinic had evening sessions. After some tests, the specialist sat down with them both to explain the diagnosis. She said that she knew it would be a shock, and that they might not remember everything, and gave them clear information material to take away. She made a follow-up appointment for them with a link worker at the clinic, so that they could ask more questions and work out what to do next. She also prescribed some tablets for Isa and explained what they were for.
Isa and Joan went home and read the leaflets together. One was for a helpline about the condition, and over the next week each of them phoned it to ask more questions, and to talk about how they were feeling.
At the follow-up appointment the link worker explained again some of the things they couldn't remember from what the specialist had said. She told them about services that could help Isa and arranged an appointment with a social worker for an assessment. She promised to make sure the social worker had all the necessary information so that they wouldn't have to start from square one. The link worker also told Isa about ways she could plan for the future and make sure she had maximum say in what decisions were taken if she couldn't take them herself.
The link worker told Isa and Joan that they could contact her whenever they needed more information. A few weeks later she got in touch about a new group that was starting for people with the condition. The group would provide information about the illness and strategies for coping with the problems it could bring. It would also let Isa meet up with other people with the same condition, and she agreed to join. There was a parallel group for carers, which Joan joined.
The social worker arranged some services which helped a lot. They meant that Joan didn't have to worry about whether Isa was eating or if she was safe. Isa's condition did get worse but because they understood the condition, she and Joan found ways to cope with each new challenge. Sometimes they spoke to their link worker for help, and sometimes they called the helpline.
Both Isa and Joan were given the opportunity to have their say about the services in their area and how they could be improved. Joan couldn't think of anything, but Isa said she'd like to walk to her day centre instead of going by taxi, for a wee bit of exercise. The day centre arranged for someone to accompany her twice a week, and she felt much better for it.
Whenever Isa's needs changed the social worker would adjust the services. Joan reduced her hours at work because she wanted to spend more time with her mother, but she was able to keep working because Isa loved going to her day centre or going out with her home support worker. Isa was able to stay at home for several years despite the progression of her condition.
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