Parkinson’s nurse specialist service

The current outbreak of COVID-19 (coronavirus) is an illness caused by a new strain of the virus. We understand that you may be concerned about this virus and have many questions. We have tried to answer as many as we can for you in this letter.

We have written to you because you are considered at risk with COVID-19 if you have a chronic neurological disease, such as Parkinson’s disease. COVID-19 can affect your lungs and airways. Complications can develop for some people with underlying conditions. You may have concerns if you are living with Parkinson’s, or you help to support someone with the condition.

We have tried to answer some common questions. However, as COVID-19 is a new virus, facts and guidance are still emerging and changing.

Parkinson's UK have produced advice that they will update.

As the situation changes you must follow government guidelines to protect yourself, your family and the NHS staff who care for you.

How can I prepare for COVID-19?

Take the following steps or ask your carers to help:

• contact your doctor and request any necessary medications; if you can do this online then this will help support your GP to reduce their workload
• have enough household supplies and groceries to stay home for a period of time
• download telecommunication applications that enable video messaging on your mobile phone or tablet, for remote consultation with your doctor and care team

What are the symptoms?

COVID-19 usually includes a fever (high temperature), a dry cough and feeling short of breath. In some cases, this can lead to complications, including a type of pneumonia.

Is there any treatment?

At present there are no medications that can treat the virus. The best way to manage if you have symptoms is to rest, take paracetamol to help with your symptoms. The current advice is to avoid taking ibuprofen for symptoms but if you need to take it for another condition then continue.

What should I do if I show symptoms of COVID-19?

Do not visit a surgery or clinic, as this could spread the virus and may mean they have to close. Tell your carers and try to isolate yourself from others as best you can.

If you get a fever or develop unexpected and continuous coughing, call 111 NHS or in an emergency 999. Ensure they know you have a condition that places you at risk. You can also contact your GP, they often have advice on their website about the best way to contact them.

Tell your care agency and any carers that arrive at your house.

Do I need to self-isolate and if so, how will I get support?

As you are at higher risk, as with Parkinson’s, you should ensure that you strictly follow the social distancing guidelines, which at the moment include staying at home. It is very important that you try to avoid the infection. This includes any medical visits unless your doctor assesses you and tells you that they are absolutely necessary. For the time being, limit personal contact to those who live in the same household or those who are essential to your care.

People who do need to be in close contact with you should also strictly follow the social distancing guidelines to reduce risk of bringing infection into your home. They may need to help you with shopping and picking up medical supplies. The UK Government has provided guidance on social distancing which you can access through the NHS website. It has useful advice for older people and vulnerable adults who need help with care

If your main carer is unable to assist you for any reason, contact your local authority for help.

If you have a professional care worker who becomes unable to support you, contact the care agency first for guidance. If the agency cannot provide alternative support, contact your local authority for help.

What should I do if I am a carer for someone with Parkinson’s?

Please continue to provide support as long as you are free of the virus symptoms and have not been in recent close contact with anyone who has the symptoms.

Take extra care with hygiene, see the UK Government's guidelines on social distancing for carer advice. It is particularly important to consider hygiene before and after supporting someone with Parkinson’s to eat and drink, also when assisting them with moving from one location to another.

Alternative care may need to be arranged if you become unable to offer support, especially if the person with Parkinson’s is unable to manage daily routines without your help. You should contact your local authority for help.

Your external carers must take extra care. Try to limit them to essential care only that cannot be done by your family. Ensure they have good handwashing facilities and are wearing gloves and aprons.

If you are unwell you must inform the agency urgently and not admit the carer to your house unless it is an emergency. You should also check to see if your carer is unwell when they arrive. If they are, you should not admit them to your house and contact the agency urgently.

Can I still work?

If you wish to continue working, or are being asked by your employer, then you should make every effort to work from home if possible. If this is not possible, then you and your employer should ensure that social distancing rules are adhered to strictly by everyone in the workplace, particularly regarding shared environments and facilities. Please contact your community nurse or consultant if you need more advice regarding this.

What else should I think about?

If you have not already done so, now is an important time to talk to your family about your wishes should you become ill and not be able to speak for yourself. If you have an advanced decision plan you should review this and update it. You should also discuss what might happen should your family members become ill.

We understand that this may be a frightening time for people with Parkinson’s and their families. We are working hard to make sure you get the best care we can offer whilst protecting everyone from the virus as much as we can.

Who can I contact for help?

You can contact your community nurse team. Email the community nurse team or call 01209 318 048.

You should follow the NHS guidelines to contact NHS 111. If you are so unwell you are unable to carry out your daily activities or 999 in an emergency.

Other forms of support

• Parkinson’s UK, call the helpline on 0808 800 0303. Join the Parkinson's UK Facebook group.
• Parkinson's UK Cornwall branch
• Kay Lillie, Parkinson’s local adviser covering Bude, Launceston, Callington, Saltash, Torpoint and Rame Head. Email Kay Lillie or call 0344 225 9839.
• Jo Sampson, Parkinson’s local adviser covering the rest of Cornwall. Email Jo Sampson or call 0344 225 9824.
• Cornwall Council. Call adult social services on 0300 123 4131 or email the COVID-19 support team.
• Neurology care advice service. Call 01209 318 106 for support with managing your condition.