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Chair of Patient, Public and Carer Panel – NHS North Thames Genomic Medicine Service Alliance

We’re looking for a Chair for a patient, public and carer advisory panel for the new NHS North Thames Genomic Medicine Service Alliance.
Closing date:
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

The role

You will lead the patient, carer and public advisory panel, in collaboration with and with support from the North Thames Genomic Medicine Service Alliance Communications and Engagement Manager.

The panel, which will have 6-8 members, 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. You will be a full member of the North Thames Genomic Medicine Service Alliance Board and the North Thames Genomic Medicine Alliance Senate, which brings together leaders from NHS organisations covered by the Alliance. The Chair role will include championing the diversity of views of the panel, leading the panel to review patient- and public-facing communications, pathway development of genomic services in hospitals, and much more. 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, and the Chair, will be offered. This will partly be decided with the successful candidate for this position.

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, as is the ability to chair meetings, facilitate discussions 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 members for the patient, public and carer advisory panel in conjunction with this Chair recruitment.

Time required

There are a number of meetings you will need to attend, spanning patient, public and carer involvement, operations, governance, and strategy. You will be a full member of the North Thames Genomic Medicine Service Alliance Board and Senate. You will liaise with the North Thames Genomic Medicine Service Communications and Engagement Manager to prepare for and organise meetings. A key priority will be chairing the patient, public, and carer advisory panel, which will meet quarterly, for a maximum of two hours per meeting. You will normally be required to read some papers in advance. There will also be email communications and work required between meetings. It is anticipated this role will require 4-6 days per month on average.

Location

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.

Remuneration

This is a paid role and you will receive remuneration 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 of work. 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.  

Expenses

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.

Supported by

The North Thames Genomic Medicine Service Alliance Communications and Engagement Manager, and the UCLPartners Patient Insight and Involvement Lead

Length of commitment

Two years, at which point Chairpersonship of the panel will be reviewed.

Apply now

To apply, please read the following information and then email the following details to contact@uclpartners.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, chairing this panel (max 500 words). Please describe your experience of leadership you think would be relevant to this role (max 200 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 morning of 28 April.

Contact

Please do get in touch if you would like more information by contacting Erin Walker, Patient Insight and Involvement Lead at UCLPartners on erin.walker@uclpartners.com

Person Specification

Life experience

  • Be either:
    • a current or previous user of NHS services (within the last 2 years)

OR

  • a carer for patients who have accessed NHS services (within the last 2 years)

OR

  • you or someone you care for has undergone genetic testing in the past three years

Judgement, motivation and flexibility

  • Experience of leadership within a work (paid or voluntary) or personal context
  • Able to absorb complex information and situations before reaching a recommendation
  • Able to display sound judgement and objectivity and understand the need for confidentiality
  • Open minded and willing to modify thinking in view of new information/discussion
  • Tests and probes constructively to achieve the best outcome for patients
  • Sees the bigger picture and can think and act strategically
  • Able to think clearly and objectively when dealing with emotive issues

Personal qualities

  • Able 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
  • Appreciates the complexity of working across organisational boundaries and joint working
  • Able to communicate and debate with others at all levels including very senior managers and clinicians in the NHS.
  • Able to give and receive advice
  • Good interpersonal skills and open to change
  • 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

Knowledge

  • Understanding and interest in genomics and in relation to its impact on people with rare or inherited conditions, cancer or other clinical areas
  • Awareness of NHS health and social care issues