Extending Parkinson’s care: Meet our helpline nurse advisers

As a valuable source of knowledge and expertise, our nurse advisers provide free, expert telephone advice, support and information on Parkinson's through our helpline. They can signpost people with Parkinson’s to appropriate internal and external resources too.

Jo Reynolds, previously a neurology specialist community nurse, specialised in Parkinson’s back in 2012 through our pump priming programme.

During her time in post, she set up 2 Parkinson’s services in London and continued to support the Parkinson’s community for 12 years before joining the charity as a nurse adviser.

Jo is 1 of 9 nurses with over 15 years of nursing experience in our helpline team, supporting patients, families and health and care professionals with information and advice on anything from medication to mental health and management of symptoms.

Now a year into the job, we asked Jo to tell us about how her team supports the Parkinson’s community and how professionals can use the helpline to support their practice.

What drew you to the helpline nurse adviser role? 

I had a very good experience when I was pump primed, so it felt very familiar. I'd always had quite a lot of contact with Parkinson's UK through the local adviser, even when the pump priming had finished. When this role came up I thought it was a good way to utilise all my skills and make use of the many years of training and experience I had with Parkinson's. I really enjoy the job and working with the patients. It was sort of the best of both worlds really.

Did you need any additional skills for this role?

Definitely good listening, although you do that anyway in any nursing role. But when you've only got telephone contact you have to be really careful to avoid misunderstandings. People can get more nervous on the phone, so I tend to ask for more evidence to make sure I'm interpreting the situation correctly. It’s also important to give patients the time and space needed to comfortably share information, enabling us to provide the best possible assistance.

And questioning skills, I think they have to be more enhanced in this role because we haven't got access to NHS records, so I always check information and try to establish a correct timeline of events.

What keeps you motivated?

Oh, it's the patients! I’ve always really liked talking to patients and meeting people and so it's still quite natural like it would be in a clinic, it still feels quite familiar. And so, that's really nice.

Also, the support of the nursing team as I can always ask for more information if I am unsure about a question someone has asked during the call.

What can health professionals signpost patients to nurse advisers for?

Medication

We get a lot of questions about medication. I would say 50%, maybe higher are about explaining how it works and what to be aware of.

Sometimes patients call us because they’d like to change the times or frequency they take their medication. We’re not able to facilitate this and we ensure patients know they must adhere to their prescribed medication regimen. Any changes should always be discussed with their consultant or Parkinson's nurse, and medications should not be stopped abruptly.

Newly diagnosed patients

We receive many calls from newly diagnosed patients who are adjusting to their diagnosis and new medication regimens, and sometimes they haven’t had the opportunity to ask all their questions or fully understand how to manage their medication.

Mental health

We get calls from patients who are very upset about their Parkinson's. Maybe they're deteriorating, low in mood and also frightened about the future. Patients and carers can often see distressing news in the media, especially if somebody dies of Parkinson's and they worry that's going to happen to them. Sometimes they only have one picture of what Parkinson's is like and that isn't always a good representation. Especially if they get on the right medication, do exercise, look after themselves. So we reassure them and help them to see the other side.

Managing symptoms and help to access end of life care

Other calls are about how to improve their symptoms, so we give a lot of self-management advice like joining an exercise group or a local group.

And then we get a few calls about how to get help for palliative care and what the symptoms are at that stage as well.

If anything comes up after you've had a chat with a patient, can you follow up with them?

Yes, if I'm not too sure about something after a call, I'll ring the patient back and I may advise them to reach out to their medical team. Not everything may be due to their Parkinson's. It’s always important to remember there may also be something else going on. For instance,  you might think they've got a blood clot or urine infection as well so you might signpost them to their GP.

When I'm concerned about a patient's wellbeing, especially if they are frail or very ill, I offer to contact their medical team on their behalf with their permission.

Similarly, if someone’s still worried after speaking to us, they can always ring us back again and we'll go through it. The team always writes up notes on each caller so we can see what's been discussed in previous calls.

What can health and care professionals call our nurse advisers for?

We can advise on how to help the patient manage symptoms. We can also discuss whether something may need further investigation to assess whether their patient’s symptoms are being caused by a different condition.

GPs will sometimes ring us to find out if there's a Parkinson's nurse in the area.

We’ve also had pharmacists, physiotherapists and psychiatric nurses ring us for advice and support with a patient.

Although we can’t give health professionals medication advice, we can give safe parameters and what we would suggest in that scenario.

Do you get calls from families and carers of people who have just been diagnosed?

Yes, especially their children. Often parents can be in shock when they find out they have Parkinson’s and sometimes their [adult] children can be in shock as well.

Do you have a moment that stands out in your career so far as a nurse adviser?

I had a call where a family member was extremely worried and upset about their loved one displaying symptoms of psychosis and wanted advice on navigating that. I identified that it was an emergency psychiatric situation and advised them to urgently contact the patient’s GP for psychiatric assessment because it could really escalate.

The family member rang back a week later and asked the helpline to thank me because the situation got resolved. So that was really nice because it helped ensure the dignity of the patient.

That's when having a community background comes in handy. Situations like this happened frequently when I was running my own case load and you need to act promptly.

What else would you like health and care professionals to know about your work?

We always endorse the advice given by the patient’s medical team as they have access to all their medical history and are experts in their patient’s condition.

If they can’t reach their consultant or Parkinson’s nurse, we can provide supplementary advice but will always advise the patient to check in with their team as soon as possible.

And if patients don't know if there's a Parkinson's nurse local to them, but there is one in their area, we would help them to access one so we're all about empowering them to connect with their own team.

So, we should work together to ensure people with Parkinson's get the best possible support. I think that's important.