What else do I need to consider?Frequently Asked Questions

People naturally have questions if they are taking on something new. Working with people is always rewarding, and fills you with a sense of achievement. You may be hoping to share an activity you love with someone, or be a member of a sports club that is looking to have members with health conditions join you. 

We met with people with Huntington's disease and they shared what they thought were important. These are some of the questions we thought may crop up and be helpful to think about.

Is it safe for someone with Huntington's disease to exercise?

The simple answer is 'yes'. The level and amount of physical activity that a person with Huntington's disease can do will vary and be dependent upon their individual capabilities and the risks that are associated with the activity. If you have concerns for someone's safety doing an activity, then speak with the person and follow your activity group's safety procedures.

Should I look out for signs that someone is getting tired?

Tripping and falling did come up as an example of what activity leaders may need to consider. Remember, a person with Huntington's Disease may not have any symptoms, and it is wrong to assume that they will. Accidents are more likely to happen as people tire, so knowing the signs to help avoid injury can be helpful. 

Do you know the signs of when someone is becoming tired and fatigued? This is useful to know when working with people of all levels. Always draw on your knowledge of the activity, its risks, and follow guidance from the governing body for your chosen activity. 

Signs to look out for:

• Reduced ability to pay attention

• Reduced ability to make decisions and remember instructions

• Poor concentration

• Motivation may noticeably decrease

• Slower physical responses. For example, they may bump into other people, or stumble more easily

• If the activity requires hand-eye coordination or skilled movements, these will become less coordinated.

What do I do when it looks like someone has had enough? I don't want to offend anyone.

If you have concerns for the person's safety doing the planned activity, speak to the individual. You want to inspire a culture where people can speak freely about their abilities and challenges, and expect you to check in with them. As someone leading or supporting an activity, it is important to ensure that everyone taking part is safe. It should not be that you are singling a person out; rather, you are watching everyone in your group and responding individually to them and their needs.

What are my responsibilities?

If you are buddying up with someone to encourage and motivate them as part of an initiative or introducing them to your sport or loved activity it is important that you know your responsibilities. If you part of a scheme or sports/recreational group, then there should be policies and procedures in place. These may include risk assessments, safeguarding children and vulnerable people, any training that leaders need to have, first aid arrangements and any insurance requirements (this is not an exhaustive list). It is important to be familiar with these so that you know what responsibilities you can be held to account for. If you do not know then ask the leaders of your group or project what is in place and whether there is any training to help support you in your role.

What do I do if the person has an accident such as a fall and hurts themselves?

If you are part of a scheme or sports / recreational group, there may be first aiders as part of the coaching team. It is important that you know how to call for help, and who to contact in case of an injury.

If you are the first person to arrive, you must:

• Check that you and the injured person are not in any further danger, and if it is possible, make the situation safe.

• If necessary, dial 999 for emergency services as soon as it is safe to do so. See the NHS website for when to call an ambulance and first aid advice.

• Carry out basic first aid. See the NHS website for first aid advice.