Palliative and end of life care: FOI release

Information request and response under the Freedom of Information (Scotland) Act 2002.

Information requested

1. What progress has been made on developing a new national strategy for palliative and end of life care? When does the Scottish Government expect to publish its new national strategy?

2. What preparatory work began in 2021 to create a new NHS National Pharmaceutical Agency? What progress has been made on these plans during 2022 so far and is the Scottish Government on track to deliver a new NHS National Pharmaceutical Agency by 2025?


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The answers to your questions are:

1. New national Strategy for Palliative and End of Life Care
The Scottish Government is currently taking stock of the leadership, resources, and partnerships needed to develop and deliver a new Palliative and End of Life Care Strategy; and is considering the structures and engagement necessary to ensure a collaborative approach. Given the importance of the views of those delivering high quality palliative and end of life care services, and in order to align with the development of a National Care Service, the development of the strategy is likely to continue into 2023, with publication timescales to be confirmed in due course.

2. National Pharmaceutical Agency

Preparatory work and progress to date
In Scotland, the majority of engagement between the industry and the NHS takes place during late-stage development prior to marketing and after product launch. This is still a valuable model, but as more complex medicines are coming into clinical practice at an earlier stage of the medicines development cycle, there is a need to ensure a more focused engagement between Industry (medicine developers and supporting industries), research, development and innovation (RD&I), academia and the NHS.

The NHS National Pharmaceutical Agency (NPhA) offers the potential to connect all our existing organisations and functions to form an ecosystem from medicine manufacture and clinical trials through to adoption of new medicines and their ongoing surveillance. It also provides the opportunity to develop a front door to the health and care system from the life sciences community.

This approach will ensure appropriate access for patients to clinical trials, companion diagnostics and marketed medicines and ensure we have the required infrastructure and skills to develop an attractive offering to potential partners at all stages of medicines development, from pre-discovery to launch. This, in turn, will help identify, assess and adopt new and emergent innovative technologies directly or indirectly relevant to medicines, including better aligning all of the associated interdependencies such as the availability of genomic testing, companion diagnostics and service redesign.

The NPhA also can assist in securing safe and high-quality medicines, at the most cost-effective price possible. Where necessary, this may include establishing expanded manufacturing capabilities for both generic medicines and ‘specials,’ something already done on a small scale in NHS Tayside. There is potential to formulate a collaborative national strategy for medicines manufacturing across Scotland, encompassing industry, academic institutions and the NHS. The initial steps should be to foster collaborative links with the traditional medicines manufacturing and cellular medicines to utilise the expertise and collaborative intent with these groups.

Whilst the work is still in an early scoping stage, early exploratory discussions have taken place encompassing topics from the Life Sciences Vision and those of current relevance to both academia and the NHS. Areas of interest include respiratory medicines, dementia, cell and gene therapies and pharmacogenomics. Proposed areas for progression require consideration of the system/environment which will be required to ensure their delivery should be nationally scalable, with a clear benefit and value to patients. We have identified that robust analysis will be required on:

  • The current landscape in these areas
  • Discovery, RD&I and manufacturing requirements
  • The availability and possible development of a skilled workforce
  • Producing a supportive environment – this includes the Scottish Government, the medicines regulatory environment and the Scottish Medicines Consortium
  • Ensuring access to patients and medicines adoption into practice through R&D and post-marketing uptake
  • An engagement strategy with industry, R&D and the NHS.

Initial plans
Our immediate priority will be to run - in collaboration with Scotland’s Health and Industry Partnership (SHIP) - an Open Innovation Challenge (OIC) to benefit dementia patients. If successful, other medicine focused OICs could be initiated utilising the same model. It is proposed that this initiative will be hosted by the Scottish Regional Test Beds, further to consultation with the national test bed strategy group. A workshop has already taken place with operational, Scottish Government and clinical leads, which concluded that the OIC should focus upon mid-life management in patients with risk factors or early signs of dementia. There should also be consideration given to patients with a diagnosis of dementia. The initial themes for innovation will focus upon:

  • Identification of patients utilising clinical risk factors
  • Adherence to medicines for conditions identified as being linked to development of dementia
  • Adherence to medicines used in the treatment of dementia
  • Agreed national medicine related outcome measurement/data for dementia

Funding has been secured for this innovation competition and it is moving through the governance process for final approval before being offered to the commercial market.

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