Rachel`s Story - Worcestershire Health and Care NHS Trust
Transcription
Rachel`s Story - Worcestershire Health and Care NHS Trust
Rachel’s Story A Health Checkers Report January 2013 Re gi s t e re d C h a rit y N o . 1 10 69 14 The Health Checkers Project Speak Easy N.O.W. is a Worcestershire charity that supports people with a learning disability to be involved in planning and speaking up about services. The Health Checkers Project looks at health care services. The project is led by a Steering Group of people with a learning disability. We pay people with a learning disability to work on the project. Rachel’s Story Rachel lives in Malvern. She has regular support to live independently. Rachel had been having headaches and blurred vision. She went with her support worker to Boots Opticians for a check up. The Optometrist The Optometrist thought that Rachel needed to have more tests to see what the matter was. They said they could see something that should not be there behind her eye. They did not know if it was on her eye or on her brain. He said that Rachel should go to Birmingham Eye Hospital. But Rachel’s support worker did not have enough time to take her. They said that she could go to the Accident and Emergency Department at Worcestershire Royal Hospital instead. Because Rachel’s support worker did not have time to take her she did not get the specialised care from Birmingham Eye Hospital. Accident and Emergency Worcestershire Royal Rachel went to Worcestershire Royal Hospital to the Accident and Emergency Department with her support worker. They told her that she would need to come back another day for an MRI scan. Rachel did not understand what would happen at the MRI scan. She was still not sure what was wrong. Worcestershire Royal have an alert system that should tell them when a patient has a learning disability. They have Easy Read guides to Accident and Emergency. They help explain advice and future appointments. But Rachel was not given one. Rachel’s support worker did not tell anyone she may need some extra support. She was not able to help Rachel to understand. MRI Scan – Worcestershire Royal Rachel was sent a letter telling her about her appointment at the Worcestershire Royal. The letter was not in Easy Read and it did not explain what would happen. If the alert system flagged up before appointment letters are sent out then better information could be sent out to people with a learning disability. It would be helpful if the hospital had easy to understand leaflets explaining MRI scans and what will happen. Because Rachel’s support worker did not know what happened at an MRI scan she was not able to explain it to Rachel. Rachel says that having the MRI scan was horrible. She found it difficult being in a confined space. Her support worker stayed in the waiting room and did not offer to come in with her. Her support worker did not explain to the hospital staff that Rachel may need some extra support. She does not know if the alert system meant that they knew she had a learning disability. Rachel’s support worker did not provide Rachel with support while she had her scan and did not ask Rachel what support she felt she needed. We do not know if the alert system told the hospital staff that Rachel had a learning disability, as they did not offer any extra support. Getting Results from GP Surgery Rachel was told that she would get the results in a week or so. She was told they would go to the person that referred her. As she had not heard anything Rachel contacted her GP. They could not give her an appointment to come in to get the results at a time her support worker could come with her. They agreed they would ring her to tell her the results. The GP told Rachel that the MRI results showed there were small changes. But that they could not see the full results and were not able to explain what it meant. The lack of availability of a support worker meant that Rachel was not able to go to see her GP to have the test results explained face to face. Rachel’s GP’s records should have shown she has a learning disability. They should have realised that she would have found it difficult to understand and remember information over the phone. Neurologist Appointment Malvern Community Hospital Rachel was told that she would get an appointment to see a neurologist. She had a wait over a month for an appointment. She was sent a letter telling her about her appointment at Malvern Community Hospital. The letter was not in Easy Read and did not explain what would happen at the appointment. There is no alert system at the Community Hospitals to let them know that a patient has a learning disability. If there was they could send out Easy Read appointment letters and information about visiting the hospital. Rachel has an Advocate from Onside. Her advocate was worried about the support Rachel had been getting to attend medical appointments and referred her to the Learning Disability Community Nursing Team. She started getting support from a Community Nurse before her appointment with the Neurologist. Rachel’s Community Nurse went picked her up from home and took her to the Neurologist appointment at Malvern Community Hospital. They found it easy to know where to go when they arrived at the hospital. She likes the hospital and thought that the waiting area helped her feel relaxed. She had been given an early appointment. This meant it was quieter at the hospital and there was no delay with her appointment. The Neurologist explained to Rachel that the differences that had been seen on the MRI scan had probably always been there and that there is nothing to worry about. As Rachel is no longer having headaches or blurred vision that was probably caused by something else. He said that just to be sure, he would see her again in 6 months time. The Neurologist did his best to explain things to Rachel. She was happy that the Community Nurse went in to the appointment with her. She helped the Neurologist to explain things. Rachel’s Community Nurse said she would write down what she had been told, so that she could look back and remind herself what had been said. It will also help her to explain it to other people. Conclusions Rachel is no longer getting headaches or blurred vision. She has now been reassured that there is nothing to worry about. She has had good medical care and been referred to specialists to make sure. Having a Community Nurse means that Rachel now has the support she needs to go to health appointments and understand what is happening. Without proper support it is very difficult to know what is happening and what all the different letters and appointments are for. Not everyone has this kind of support. Systems that tell us that someone has a learning disability could be used better. If GPs, Hospitals and other health care workers know that someone has a learning disability they can make sure they get the right support. Easy Read letters and information will help people to understand what is happening. This kind of information could have explained to Rachel what Neurologists, Optometrists and MRI scans are. Difficult Word List Optometrist Someone who carries out eye tests in a local optician shop. Neurologist A doctor who looks at brains. MRI Scan A machine that takes pictures of the inside of your body to see if anything is wrong. For more information about the Health Checkers Project, please contact – Morag Edmondson, Health Checkers Project Coordinator 01905 774247 [email protected] www.speakeasynow.org.uk