The Neurological Alliance patient experience survey
A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively influence future neurology services.
About the survey
The survey is by The Neurological Alliance – an organisation that brings together organisations working to make life better for millions of people in England with a neurological condition. Through the patient experience survey, The Neurological Alliance aims to positively influence the future quality of neuro health and social care services. Too often services fall below the standard expected. This survey aims to help change that.
Many people enjoy warmer temperatures, but some people with neurological conditions may have problems in the heat. We look at the reasons why you may be more sensitive to hot temperatures, and suggest some ways of managing when it gets too hot.
Why are warm temperatures an issue for people with neurological conditions?
Hot temperatures can be a problem for many people with brain and spine problems. The heat is not just a problem in summer weather - it can also affect you if you have a hot bath or spend time in a warm place like a sauna.
There is a part of the brain called the hypothalamus which is responsible for controlling your body temperature, keeping it at the right temperature in hot or cold conditions. It does this by sending signals to the body to start sweating if it gets too hot, or shivering if it gets cold. The following link gives more details about the anatomy of the brain and spine.
Hot temperatures can stop nerve fibres from working properly. This means that sometimes messages cannot get through to and from the brain. Because of this you may experience fatigue, weakness, or problems with balance or vision.
Also, in some people who have an existing medical condition, the hypothalamus does not work as well as it should and so they may not be able to keep cool so easily.
If you have a neurological condition you may already suffer from tiredness, exhaustion or a lack of energy, and this can be made worse by the heat. This is because you are more easily dehydrated and the blood does not flow around the body so easily. Certain medications, such as some blood pressure medicine, can also affect your tolerance of heat.
In hot weather you may be more vulnerable to heat rash or eczema, because you will be hotter and sweating more, and you may be at a higher risk of heat stroke.
Dealing with warm temperatures
Ideally you would be able to avoid warm conditions at all times, but even in the UK we do occasionally experience a heatwave! If you can't avoid higher temperatures, here are some tips for coping with the heat.
- Keep hydrated. Make sure you drink regularly throughout the day, and always carry water with you if you go out.
- Cold foods like salad and fruit have a high water content which will help you keep hydrated, as well as containing lots of healthy nutrients. Ice lollies can also help!
- If you have exercises to do, such as physiotherapy, try to get these done in the coolest parts of the day. Avoid exercising or doing too much when the temperature gets too high.
- Avoid going out in the sun during the hottest time of the day (between 11am and 3pm).
- At home, open windows and keep curtains drawn if the window is in direct sunlight.
- You could use an electric fan to keep the house cool.
- Wear light fabrics, open shoes or sandals and a hat to shade you from the sun. Don't wear anything that is too tight, and avoid dark colours.
- Spray cold water over yourself or have a cool shower. Some people find that putting their hands or feet in a bucket of cool water helps to cool their whole body.
- Try to avoid going between hot and cold environments (e.g. from the midday sun to an air conditioned building) more than you need to, as this can make you very fatigued.
- Look after your skin. Make sure you keep it clean and moisturised, and pay attention to areas or folds of skin where sweat and moisture can build up.
While we cannot directly endorse or recommend products, many people have found cooling pillows useful for soothing migraines. Other 'Cooling garments' designed originally for people with MS are also available. The MS Trust has more information on suppliers.
We asked our Facebook followers how they coped with the heat in summer. Here were some of your responses:
- "I don't go in the sun without a hat on."
- "I use bowl or bucket of cold water for the feet - a paddling pool for all ages!"
- "Keep fluid intake up."
- "Take a cold shower 2x a day."
Useful links and resources
Much of the information available about coping with the heat is aimed at people with MS, but if you have any type of neurological condition you may still find it useful.
- Hot and cold - the effects of temperature on MS. A fact sheet from the MS Society.
- Staying cool with MS. Information from the MS Trust.
- Heat exhaustion and heatstroke - NHS Choices
This information was last checked in March 2016