Patient, Public and Carer Advisory Panel Members – NHS North Thames Genomic Medicine Service Alliance
5 April 2021
The NHS North Thames Genomic Medicine Service Alliance is one of seven new alliances being created across England to work with patients and the public. We aim to build trust in genomics and provide clinical leadership to enable healthcare professionals to use genomics safely, effectively and efficiently to help improve lives. Potential improvements in care for patients include better, quicker diagnosis of rare conditions, and personalised treatments and care for people with inherited conditions and cancer. (For more information on genomes and genomic medicine see: https://www.genomicsengland.co.uk/understanding-genomics/what-is-a-genome/)
The Genomic Medicine Service Alliance will work with the North Thames Genomic Laboratory Hub, a partnership between a number of NHS trusts across North Thames to:
- Address variations in genetic testing quality and access across the country
- Enhance the quality of information e.g. the cost and type of tests performed in order to provide improved patient care
- Broaden understanding of the causes of disease and the effectiveness of interventions
This is a brand-new panel, and we are looking to recruit a mix of 6-7 patients, members of the public and carers. The panel will be led by a Chair, in collaboration with and with support from the North Thames Genomic Medicine Service Alliance Communications and Engagement Manager.
The panel will help ensure that the views of patients, carers and families are at the heart of the Genomic Medicine Service Alliance, informing relevant discussions and decision-making. The panel will review patient- and public-facing communications, and be involved in pathway development of genomic services in hospitals. The role of the panel will evolve over time, and with that we expect there will be a wider set of engagement and involvement opportunities the panel will be offered.
We are interested in hearing from people with lived experience of undergoing genetic testing – either as a patient, carer or family member – within the last three years. We would also welcome applications from members of the public without experience of genetic testing but with an interest in improvements in the NHS through whole genome sequencing and genetic testing. Familiarity of the way NHS health and social care works, and basic knowledge of whole genome sequencing is crucial for all members of the panel, as is the ability to actively participate in group discussions, advise, and make recommendations.
You will either live in or have received care in the North Thames region (which covers west, north, and east London and parts of Essex and Hertfordshire) or have a connection with the area. We are particularly keen to hear from people from marginalised communities, and people from Black and minority ethnic backgrounds. We are recruiting a Chair for this patient, public and carer advisory panel in conjunction with this panel member recruitment.
Meetings will be held every three months, for a maximum of two hours per meeting. You will normally be required to read some papers in advance. There will occasionally be electronic communications and work required between meetings. It is anticipated this role will take between 0.5 – 1 day per month.
Given the current COVID-19 pandemic, all meetings will be undertaken virtually using Zoom or MS Teams. This is likely to continue for the remainder of 2021. This will be reviewed in in 2022.
If/when travel becomes safe again, and physical presence at a meeting apart from the patient, public and carer advisory panel is required, it will be reimbursed. There will always be an option to join virtually.
This is a paid role and you will be remunerated in accordance with the NHS document, “Working with our Patient and Public Voice Partners – Reimbursing expenses and paying involvement payments” to acknowledge your contribution to the panel. This amounts to £75 per half day, and £150 for a whole day. Any involvement payments may be classed as earnings or income by Her Majesty’s Revenue and Customs service (HMRC) or the Department for Work and Pensions (DWP). You would be responsible for declaring this income to HMRC, DWP, Job Centre plus or other agencies as appropriate. If you are in receipt of state benefits, you should seek advice from the relevant agency, for example JobCentre Plus, ideally in advance of applying and certainly before accepting an offer of a role which attracts an involvement payment, even if you intend to decline the payment.
The North Thames NHS Genomic Medicine Service Alliance Communications and Engagement Manager, and the UCLPartners Patient Insight and Involvement Lead
Length of commitment
One year, at which point membership of the panel will be reviewed.
To apply, please read the following information and then email the following details to email@example.com by 5pm on 5 April 2021.
Please tell us a bit about yourself, and your experience – both as a patient/carer if relevant – and why you are suitable for, and interested in, joining this panel (max 400 words). You can either include this information in the body of an email or attach as a Microsoft Word document or PDF. We will acknowledge your application by email.
People who are shortlisted will be invited to join a virtual (e.g. using MS Teams or Zoom) group interview on the afternoon of 26 April.
Please do get in touch if you would like more information by contacting Erin Walker, Patient Insight and Involvement Lead at UCLPartners on firstname.lastname@example.org
- Be either:
- a current or previous user of NHS services (within the last 2 years)
- a carer for patients who have accessed NHS services (within the last 2 years)
- you or someone you care for has undergone genetic testing in the past three years
Skills and aptitude
- Good communication and influencing skills
- Ability to form and maintain working relationships
- Good time management skills
- Ability to proactively raise issues in meetings
- Openness and transparency
- Takes initiative
- Ability to consider multiple perspectives
- A commitment to the Nolan Principles of Public Life (available at https://www.gov.uk/government/publications/the-7-principles-of-public-life)
- An understanding of issues relating to equality, diversity and inclusion in healthcare
- Ability to be objective about one’s own patient or carer experience and use this experience where relevant in order to positively contribute to the advisory panel
- Appreciation of the complexity of working across organisational boundaries and joint working
- Lives in or have received care in the North Thames region (which covers west, north, and east London and parts of Essex and Hertfordshire) or have another connection with the area
- Some understanding of whole genome sequencing, and issues around genomic testing
- Awareness of national health and social care issues