Leaflet for helpers

at the Kingfisher Barn M.E. week (5th – 12th May 2001)

Thank you for offering to help at Kingfisher Barn; it is very much appreciated. If you have any queries or problems, ask Pat, Mary or Zoë Beveridge (who will be there all week). If someone needs help with transferring (e.g. from chair to bed/toilet), bathing or dressing, please contact Mary or Pat. Should you want to ask anything beforehand, ring Pat on … Please say if you are asked to do something that you feel unsure about, or that isn't good for you (e.g. if you have a vulnerable back). Ask other helpers for assistance.

Here are some guidelines to enable you to offer the most appropriate assistance for those with M.E. The effects of the illness vary both from person to person and from one moment to the next. Some people will be more visibly disabled than others, but remember that many aspects of the illness are invisible. There are around 200 possible symptoms including pain (of many different types); flu-like malaise (especially after activity), concentration difficulties and paralysis. They might look fairly `well' when you see them, but may have spent much of the day resting and feeling very ill.

Pacing

It will be hard for the people with M.E. to pace their activities. They will have to prioritise and decide what they most want to spend their energy on during this special week. Meeting others with the illness is likely to be top priority; it may be the first opportunity they have had to meet anyone else with severe M.E. We have said that it is up to them to ask if they feel like doing something, rather than the helpers making suggestions. This is because we don't want to tempt people to do too much if we can help it The person you are with may need a rest at any time (even seconds after starting an activity). Let them guide you and make sure they have plenty of opportunity to tell you when they need to stop - perhaps you could ask them whether they need a rest and/or how long they expect to be able to spend doing an activity. If someone asks you to take them back to bed, avoid delays where possible, as they may need to rest urgently. `Resting' does not generally mean sleeping.

Noise and stimulation

With M.E. it becomes difficult for the brain to process information and to filter out excess stimuli. It can be very difficult and draining for people with M.E. to try and concentrate on more than one thing at a time. For example they may not be able to talk/listen at the same time as moving around or if there are other noises. Try to avoid two people talking at once - if you spot a situation like this, it might be appropriate to ask those with M.E. if they would like to move. Please be aware that noise can be a problem and try to avoid excess noise such as overscraping of plates. There is likely to be somebody resting all the time, so try to be quiet around the bedrooms.

Wheelchairs

We have some copies of a leaflet called 'Assisting a wheelchair user' which might be worth reading especially if you are not used to wheelchairs. Some participants will be very limited in how long they can spend in a wheelchair, and in how far they can go. Aim to keep the ride smooth, avoiding gravel and bumpy ground where possible. They might need to go slowly, especially when turning - ask the individual for instructions on this.

Food

Many people with M.E are prone to low blood sugar so may need to eat between meals. There are some instant snacks in the kitchen or people may have brought their own. If they want a meal it can be reheated in the microwave.

Buzzer

There is a call system from the barn bedrooms that sounds in the carers' bedroom, and (via an intercom) in the main barn. You can tell who has called because there will be a light outside their room. Please go and see what they want. The buzzer can be turned off in room number one, on the left hand wall.

Red, Amber, Green

We are hoping to have a sign (possibly in the form of coloured sticky tape) on the bedroom doors or in the windows so that people can signal their needs. Red means ‘please do not disturb’; amber means `I can be disturbed for a minute or two'; and green means `I would welcome company’.

Chemical Sensitivities

As some participants are sensitive to chemicals please use only unscented non-aerosol deodorant before you come to Kingfisher Barn, and avoid perfume, aftershave and hairspray

Smoking is not allowed in the buildings but you can smoke outside. Please be aware that some people may be sensitive to smoke. If you could bring an outer garment to wear when smoking, and then take it off when you have finished, it would be helpful.

Possessions

Please label your clothes and possessions clearly with your name.

Here is a map of how to get to Kingfisher Barn We look forward to seeing you there!

PS If someone is lying on a bed don't sit on the bed unless invited to, as it can be painful.

This leaflet was written to give to those helping at the respite care week for people with M.E. Feel free to adapt and use it yourself.

Zoë Williams