Supporting carers: brand new education opportunity in 'grabbing a minute'

14 Jan 2022

Nicole Kirbyshire, Service Designer for Parkinson’s Connect - the name for Parkinson’s UK’s evolved support service, spoke to Neurology Academy about the charity’s latest initiatives, specifically around increased support for family, friends and carers.

There are a number of areas where Parkinson's UK is supporting family, friends and carers - and one of these initiatives is a new online module, developed as part of the work of the UK Parkinson’s Excellence Network which supports healthcare professionals to provide quality Parkinson’s care.

Healthcare professionals have told Parkinson's UK that supporting carer partners often means that the person with Parkinson's is better supported, and that there are specific things that can make a difference in practice around this. At the same time, family and friends who support someone living with Parkinson's have shared that, often, the only way they found out about the wider support available to them and their family was through information from a healthcare professional. Additionally, those professionals who engage with a person's care partner within a clinic consultation often find they gain a better understanding of the person with Parkinson's current experiences.

'Healthcare professionals can miss out on vital information if they don't include the carer as part of the consultation. People with Parkinson's might not recognise changes, or don't want to share them. If the carer isn't asked, professionals don't always get the full picture.'

With all of this in mind, Parkinson’s UK launched a bespoke online module for healthcare professionals at the start of the Autumn. The course comprises an assessment, a webinar and supporting resources and materials. The webinar element is led by Professor Annette Hand, a specialist nurse with both clinical experience and a research background in involving and supporting carers of people with Parkinson's, and with contributing material from a number of family and friends affected by Parkinson's, the unique education is available freely via Parkinson's UK's website.

The education covers important elements in supporting families and care partners, including increasing understanding of the realities of this role, identifying if someone is struggling in their caring role, why and how to include families and care partners in important conversations about management and treatment, and advice on how to do this effectively.

'We know that family care partners need to be able to share information about their loved one as part of clinical conversations and care planning. The challenge is often in connecting with them in a way that is comfortable for them, and won't impact their relationship with their loved one. Sometimes they might feel that they're being disloyal by sharing something…'

The training acknowledges this difficulty and gives practical ideas on 'grabbing a minute' with family and care partners, both in virtual and face to face settings.

'It can require creativity - but anything from booking a separate call with the care partner, to suggesting they might be interested in a particular resource and taking them to one side to 'show' it to them. Just a few moments of specific time with the care partner can be really valuable.'

Parkinson's Connect, the support service from Parkinson’s UK, is very aware that family, friends and care partners have very specific needs of their own. They may want information on medication, side effects or specific challenges like impulse control disorder relating to their loved one, but they may need information on support in their own right. How to have discussions about paid help in the house, for example, getting regular respite or applying for financial support. They may need emotional support, access to connection or social inclusion.

'Everything we do via Parkinson's Connect is for both people with Parkinson's and their family and friends equally. Future digital elements over the coming years will help to make this more tailorable too.

When a family, friend or carer is referred into Parkinson's UK, they'll be put onto a 'carer's pathway' with similar information as for someone with Parkinson's, but additional information on self-care and supporting themselves from the first point of diagnosis. We often meet people when they hit a crisis and we want to have these conversations early on so that the crisis can be mitigated and planned support can be eased into life slowly.'

Nicole discussed a range of digital and non-digital elements being developed at present which will ultimately enable an individual or care partner to receive a direct referral to Parkinson's UK from their healthcare professional to ensure they can access tailored information, practical support, and onward signposting according to where they are in their journey at that time.

'We want to connect with everyone affected by Parkinson's from the point of diagnosis, and provide them with support, information, education and connection from that point onwards. There are some really exciting initiatives in the pipeline and these will all become mainstream for the charity in the next few years.'

In the meantime, all healthcare professionals are encouraged to access the free education to learn how to better support and involve care partners and family members in an individual with Parkinson's' planning and care - and encouraging anyone affected by Parkinson's to tap into Parkinson's UK's resources will hopefully make a big difference to how they experience the condition and its impact on their lives.

'The things you can't get from the books'

Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.