NAC: Beneficiary Engagement

Mark Spofforth Thalidomide Trust trustee

In Focus: Mark Spofforth explains the reasons why Trustees are making changes to beneficiary engagement

Mark Spofforth - Chair of Trustees

In February, we all received an email or letter from Mark Spofforth informing us that the independent Governance Review recommendations included reviewing how Trustees engage with beneficiaries, to ensure a wider representation of beneficiary views.

You will now have received a questionnaire asking you how you feel this should happen.

We asked Mark questions about the review, the consultation process and how he feels the outcome will improve our Trust…

What is a Governance Review and why did the Trust need one?

Every charity is recommended to have a regular review of their operations and how the Trustees make their decisions. Good governance is a key feature of well-functioning charities. The successful delivery of their purpose and serving their beneficiaries must be supported by an effective Board, showing leadership, good decision making, and a grasp of risk and integrity in a climate of openness and accountability.

Our Trust has not had a Governance Review since 2007, and although our strategy planning day in 2022 (which included a mix of NAC members, Trustees, and staff) did not place a high priority on this exercise, the NAC pressed for a review.

What were the key recommendations from the review?

The Compass Partnership – independent experts in this field who have conducted reviews with a wide range of charities, including a large number of disability charities - carried out a thorough and detailed review for us. There were a number of administrative recommendations (important, nevertheless) such as a scheme of delegations by the Trustees to the chief executive, a code of conduct for behaviour in all committees, as well as a suggestion to conduct a skills audit of the Board to make sure we have all the appropriate skills around the table and identify any training needs for our Trustees.

Although a number of items were recommended for more intense self-review, the general report said that we have a committed, informed, and effective group of Trustees in comparison to other Boards they have reviewed.

However, although the overall conclusion is that while the Trust has the highest standards of governance, it did suggest that the NAC, as currently structured, managed and constituted, is unable to provide the Trustees with the advice we require to manage the issues impacting the beneficiary community in the future.

Why did the Trustees feel they needed to act so quickly, including cancelling the NAC elections?

It quickly became clear on reading the report that substantial changes would be required. The process that had allowed the Board to understand beneficiary views, was no longer working.

It didn’t seem fair for the candidates to go through the electoral process without knowing what they were committing to. The governance report stated that NAC members themselves (through questionnaire and interview) had been highly critical about the processes, meetings and dynamics of the NAC, pointing out real internal concerns about behaviour and control.

Trustees quickly concluded that we needed to review and change our processes for beneficiary engagement, and that this project needed to be finalised at our Trustee Awayday in June.

How have Trustees decided on the ideas on engagement with beneficiaries that have been included in the consultation?

A small steering group has been driving the review. Two meetings have been held with staff, Trustees and NAC members to confer, suggest, and design new ways of working. Now we await the responses from the wider beneficiary community.

The ideas do need to be tested to check they succeed in improving the communication and involvement of more beneficiaries, with 'new blood' having their voices heard. The steering group reviewed the ideas against criteria such as the method of engagement, the possible barriers to input, the level of support that might be needed to achieve success, and the resource implications of implementation.

Other functions of the NAC, such as campaigning, are excluded from this part of the review.

What do you think engagement with beneficiaries will look like?

Successful engagement, to be effective, will produce:

For Trustees:

  • Greater level of face to face or virtual contact with beneficiaries.
  • Better understanding of beneficiaries lived experience.
  • Greater confidence that our decisions meet beneficiary needs effectively.
  • Ways of seeking proactively the views of the community direct from beneficiaries.

For beneficiaries:

  • Different ways to engage with Trustees so that each can choose their preferred communication route.
  • The opportunity to hear from, and to ask questions of, Trustees.
  • Increased confidence that Trustees and staff understand their needs.

There will be more opportunities to engage, more beneficiaries expressing their views, and appropriate engagement of key third parties (such as carers / families) as beneficiaries age. There would also be more opportunities to innovate in designing and co-producing support strategies.

Will this affect future Diageo discussions?

The recent round of discussions, based on evidence of beneficiary needs that the negotiating team pulled together from HNAs, case studies presented by NAC reps / beneficiaries, and the NAC consultation, produced a very favourable outcome in my view.

The NAC consultation showed us that the top priorities for the majority of beneficiaries were reassurance that grants would continue throughout lifetimes, and that there would be  additional funding available if their needs increased in the future. This changed our approach somewhat and we were able to bring into the discussions the work done on the Future Care Cost Report predicting beneficiaries’ changing needs in the next decade. We achieved that reassurance and additional finance from Diageo for private treatment, mental health support and the additional costs associated with cognitive decline.

If we had not been informed about the majority view, and purely concentrated on obtaining the maximum lump sum payment (which we had been assured by the NAC was the priority for beneficiaries), we might not have achieved this reassurance and finance for needs-based support as well as a lump sum. It reinforces Trustees’ view that moving forward, we need to have direct wider engagement to ensure representative beneficiary viewpoints are known before future discussions.

How will this improve our Trust?

We hope that it will futureproof our operation, allow for better design of specific support strategies for individuals and improve confidence that the correct decisions will be made.

Read more from the NAC in the full Spring 2023 Newsletter (PDF)