Please note that all session and slide content are the views of the Speakers, not the Parkinson’s Academy. The content of the recording is the speaker’s personal opinion at the time of recording. Due to the everchanging situation, advice given at the time of recording is subject to change.
Alison Leake, Parkinson’s Disease Nurse Specialist, St George’s University Hospitals NHS Foundation Trust
Jane Price, Parkinson’s Disease Nurse Advanced Practitioner, Powys Teaching Health Board
Louise Ebenezer, Parkinson’s Disease Nurse Specialist, Cwm Taf Morgannwg University Health Board
Dr Annette Hand, Nurse Consultant/Associate Professor, Northumbria Healthcare NHS Foundation Trust
Patsy Cotton, Advanced Nurse Practitioner Movement Disorders, NHS Greater Manchester Neurosciences Centre
Starting medication in the newly diagnosed during lockdown (1:42)
Dr Annette Hand described her experience of using the NHS video consultation platform, Attend Anywhere, to see new patients during the pandemic.
At the start of lockdown, in March 2020, she had around 200 referrals. She was faced with the choice of telephone or video consultations, but some patients do not have access to a laptop or computer.
On telephone consultations, she said it was difficult to get a full history or a good description of symptoms, but she had picked up on signs of “worrying neurology”, and had been able to get those people into hospital for urgent scans or appointments.
“But on the phone, I would never diagnose someone with Parkinson’s if I had never met them, I don’t think that is safe, and I certainly wouldn’t start treatment,” she said.
Describing the Attend Anywhere platform, she said:
- the system is NHS-approved and secure
- patients receive a link to the consultation which they can access from their own computer
- other family members can join from anywhere in the world
- the platform can facilitate weekend and evening consultations
- the platform links to SystemOne, an electronic health record that gives healthcare professionals access to family history, blood pressure, medication, etc.
- the platform allows for assessment of everything but rigidity
- referrals for urgent appointments or scans can be made through the platform
- it is a real-time record that GPs can also access, facilitating joined up care
- medications can be prescribed and managed through the system
“This is one way for me to ensure that my assessment of a new patient is thorough, clear and precise,” said Annette.
To treat or not to treat? (7:48)
“What people are like during lockdown and COVID is very different to what they were like before. There is a lot more anxiety and inactivity,” said Annette.
In all Parkinson’s prescribing decisions, healthcare professionals needed to address reality verses expectation, she added. Consultations should include:
- what does the patient want to achieve?
- what can the medication do to improve someone’s symptoms?
- discussions about what the drugs will do, how well they work, how long their take to work, what will get better and what won’t
- discussions about the possible side effects early on
- provide written information via the post or by signposting to Parkinson’s UK
- reassurance that it is OK to delay treatment if they do not feel they are ready
All this can be achieved via a video consultation, Annette said.
Medication review by virtual consultation (19:09)
Jane Price said that medication reviews were just as important during lockdown as at any other time.
“It is important that medications reviews remain timely. What we are doing should be reasonable and proportionate, and we shouldn’t be making massively sweeping changes to drugs when we don’t have the access to go in and review somebody,” she said.
“It is about damage limitation. I am trying to keep things stable, and I discuss with the patients that this might not give the most optimal treatment. I’m doing things very gradually to support them through this period.”
During virtual consultations, Parkinson’s practitioners needed to:
- understand the patient’s compliance, looking for clues such as medication surpluses
- understand what the patient expected from their medication
- be able to pick up on sides of adverse effects and address them
- be ready to explain that sometimes reducing medications could be more effective than increasing them
- continue to work within their own scope of practice and follow the same procedures as they would use when seeing patients face-to-face
- speak to their medicines management team if they had any doubts
- maintain strict record keeping regarding any changes, being careful to document what decisions are based on
Jane also shared the information check list she sends out to patients ahead of a telephone/virtual appointment (see slide 12). This, she said, had helped ensure both patients and healthcare professionals were ready for the consultation.
In conclusion, she said: “Remaining patient centred is crucial. Look at what is actually happening, rather than what you think might be happening. Remember that ‘get it on time’ is still important, but that the times that they are getting it might be different – routines have changed.
“PD medications shouldn’t be stopped abruptly, so prompt them to make sure they’re putting their repeat order in in enough time… Remember to stabilise, not optimise, reassure them, record, and always plan a review.”
Hospital self-medication management (35:12)
Sharing best practice is essential to ensuring people with Parkinson’s admitted to hospital are able to continue their medication and avoid devastating side effects, said Patsy Cotton.
“All healthcare professionals involved with the delivery and care of people with Parkinson’s are equipped with the knowledge and skills to deliver medication management on time, every time… but we still find that many people who go into hospital, unfortunately, do not have their medication on time,” said Patsy Cotton.
The reasons for this include:
- people with Parkinson’s are experts in their own condition, yet when they are admitted to hospital, they are often too poorly to communicate the importance of their medication and medication schedule. This can be compounded by repeated missed doses
- Parkinson’s medication schedules often require a frequency that does not correspond with ward drug rounds
- Ward staff may not have adequate knowledge of Parkinson’s and its treatments to make recommendations
The possible consequences of stopping Parkinson’s medication during hospital admissions include:
- increased length of stay
- irreversible deterioration in ability to walk or talk
- severe side effects including acute akinesia, neuroleptic malignant syndrome, and Parkinsonism-hyperpyrexia syndrome (PHS)
- PHS is rare, but potentially fatal
Following a campaign by Parkinson’s UK and specialist healthcare professionals, the Care Quality Commission (CQC) published guidance classifying PHS as a “never event”, in January 2020.
The CQC states that patients should receive their medication at an appropriate time, and that self-administration, where appropriate, is a key part of that.
“This does not happen throughout the UK, indeed very few hospitals do it successfully. I am pleading with you, if it’s working in your hospital please let me know so that we can get a standard statement and ensure that this will happen much more frequently,” said Patsy.
In conclusion, she said that PHS represented the worst instance of medical failure and should never happen.
“We believe that by making it a never event we will see a clear improvement in medicine management, and we want to standardise the medication policy throughout the UK. If anybody has good practice, please share it.”
Remote prescribing during COVID-19: Case studies (45:49)
Louise Ebenezer talked delegates through two case studies, highlighting the importance of a patient-centred approach to medication management during the COVID-19 crisis.
The first was a 59-year-old woman with Parkinson’s and type 1 diabetes suffering from increasing anxiety and isolation during lockdown. (see slides 2 – 4) (45:54)
The second case study looked at a man in his 70s who had been diagnosed with Parkinon’s in 2004, and had hypertension and raised cholesterol. Louise worked to manage his medication after an increase in falls and hallucinations (see slides 5 – 8). (51:05)
In both cases, medicines management followed detailed holistic assessment of the person’s medical history and healthcare and quality of life priorities, Louise explained.
Telephone clinic information
By Jane PriceTelephone Clinic Information-Jane-Price-May-2020
This meeting is designed and delivered by the Parkinson’s Academy and sponsored by BIAL Pharma. The sponsor has had no input into the educational content or organisation of this meeting.
Posted in: COVID-19