Getting ready for hospital visits

As we get older, visits to hospital might become more frequent. The most common age to be in hospital is under the age of five, but after that the rate of hospitalisations goes down again until we get to about 45 years old, and from there it pretty much just keeps climbing! About half of all adult hospital discharges occur after the age of 60 – that’s when someone is admitted to hospital and then able to go home again. The average stay is about six days, but nearly half of these visits are during the day only and include things like scans, blood infusions, biopsies, keratectomies, some dental procedures, removal of skin lesions, and other things that might not require an overnight stay but do become more common as we age.

The good news is that they don’t have to be scary or unpleasant experiences. If we are well-prepared, and if we are respected and treated kindly and with dignity, then visits to the hospital can become – if not necessarily something to look forward to, then at least something that is simply a routine part of life, and not to be dreaded or feared. A recent study in New South Wales in Australia, found that people with an intellectual disability such as Down syndrome, only had their disability noted by hospital staff one in every five hospital admissions. This is very concerning, as understanding and recognising an intellectual disability can be crucial to someone’s care, just as acknowledging someone’s cultural background, religion, past traumas, or gender might make a significant impact on the quality of care, or be the difference between a positive hospital experience or a traumatic one. This in turn can affect whether or not a person seeks help in the future. The Australian researchers, Adrian Walker and Julian Trollor, found that something called ‘reasonable adjustments’ can and must be made to healthcare in order to improve the experience for people with intellectual disabilities, and that they can ultimately lead to longer, healthier lives. According to Walker and Trollor, “reasonable adjustments include adjusting communication, providing extra time and support, and involving the person in choices and decisions.” In Aotearoa, the Health and Disability Commission have a well-known Code of Rights that practitioners must abide by. The poster informing us of these rights (on the next page) will be familiar to most. The very first right is to be treated with respect, and it is from this principle that all the subsequent rights flow. Right Five, the right to effective communication, is the kind of reasonable adjustment that all health and disability workers should be making for their patients or clients with Down syndrome. Right Ten is the right to complain, and if you feel that any of these rights have been breached, you can make a complaint to the Health and Disability Commission. Doing so might not only be helpful for you and your whānau, but could also make a difference for others in the future.

Health Quality and Safety Commission NZ Resources This entity has created a fantastic Easy Read resource to help someone with an intellectual disability to get ready for a hospital or other health care visit. This can be accessed by going to their website, clicking on resources, then going into their Resource Library and using the search function. Here are some of the key suggestions in that document: • Write down a list of any questions you have for the doctor or health professional • Bring a list of any medications or supplements you take • Decide if you want to bring a support person or interpreter • Bring your My Health Passport if you have one • Share how you are feeling in the way that works best for you. The Health Quality and Safety Commission has also created an Easy Read resource on getting ready to leave the hospital. Some of the recommendations in this document include: • Ask questions of the doctor or nurse before you leave • Write down their details like name and phone number if you have quesions later • Make sure you know when you next need to see your doctor or come back to the hospital for a follow-up appointment • Write down a list of the medication you take – especially if your visit has lead to changes • Ask if there are any symptoms you need to look out for at home.

My Health Passport This is a booklet you, your doctors, your whānau, and any other relevant people can write in to keep track of your health and disability services. It isn’t a substitute for medical records but can be helpful to communicate with health professionals and other carers. You can download this from the Health and Disability Commission website (hdc.org.nz) or you can request one from the Commission or from a health and disability organisation.

Rightswhen receiving a Health or Disability Service Your

Respect

You should be treated with respect. This includes respect for your culture, values and beliefs, as well as your right to personal privacy. Fair Treatment

No one should discriminate against you, pressure you into something you do not want or take advantage of you in any way. Dignity and Independence

Services should support you to live a dignifi ed, independent life. Proper Standards

You have the right to be treated with care and skill, and to receive services that refl ect your needs. All those involved in your care should work together for you. Communication

You have the right to be listened to, understood and receive information in whatever way you need. When it is necessary and practicable, an interpreter should be available. Information

You have the right to have your condition explained and to be told what your choices are. This includes how long you may have to wait, an estimate of any costs, and likely benefi ts and side effects. You can ask any questions to help you to be fully informed. It’s Your Decision

It is up to you to decide. You can say no or change your mind at any time. Support

You have the right to have someone with you to give you support in most circumstances. Teaching and Research

All these rights also apply when taking part in teaching and research. Complaints

It is OK to complain – your complaints help improve service. It must be easy for you to make a complaint, and it should not have an adverse effect on the way you are treated.

If you need help, ask the person or organisation providing the service. You can contact the local advocacy service on 0800 555 050 or the Health and Disability Commissioner on 0800 11 22 33 (TTY).

NZDSA Reource You can also find a series of videos in the NZDSA resource library on our website entitled ‘Creating a Positive Hospital Experience’. This could be a good option for those who prefer audio-visual rather than written information. There are videos about going to hospital, the dentist, and the GP, as well as summaries for caregivers and health professionals. Any member can view these resources and it’s free to join.