Consultations and submissions

Here are our key consultation responses



Sue Ryder is pleased that the Scottish Government are looking at the development of a new approach to tackling the issues of loneliness and social isolation which we know through experience impact upon many of the individuals and families that we support.


Sue Ryder is delighted to have been invited to give evidence to the Scottish Parliament’s Health and Sport Committee as part of its inquiry into preventative spend. Read our response to the inquiry.



We support the Scottish Government’s ambition of ensuring Scotland has a workforce which is “deployed in the right places, in the right numbers, doing the right things.” We also agree that moving away from hospital care, and where possible residential care, to community services is the right approach to take as this is what allows more truly person-centred, holistic care and support.

However, this should not be seen as the cheaper option – even though some cost-benefits in some cases may be realised – but should be regarded as the right outcome as most people would prefer to be at home.

There is one issue we would like to highlight in the context of consultation with stakeholders by integration authorities, and that is the provision of care for people with neurological conditions, such as motor neurone disease, multiple sclerosis, Parkinson’s disease and Huntington’s disease.  


An independent review of Scotland's health and social care indicators is underway. Along with Marie Curie and Hospice UK, we have submitted a paper outlining the case for having an indicator on use of anticipatory care plans. This would greatly improve access to palliative care - something that the Scottish Government is striving to do. 



The Public Account's Commitee's role is to make sure that the government is spending its money effectively and fairly. Throughout the year they consider different areas of government spending, and recently they have been looking at services for people with neurological conditions. As part of their investigation, they invited organisations with expertise in this area to submit evidence to inform their enquiry.

Sue Ryder made a submission, available above, which highlighted a number of serious problems in this area, including lack of data on people's needs; lack of leadership regarding the provision of services; and poor coordination between health and social care systems.


Sue Ryder welcomes the opportunity to comment on aspects of this inquiry. As a provider of hospice and neurological services and a campaigning organisation that exists to improve the lives of people at the end of life and with neurological conditions, we know the importance of primary care for both groups of people. Many of the people that access our services also continue to access primary care as part of their care. In responding to this inquiry we will only comment on issues which are pertinent to the expertise and mission of Sue Ryder.


  • Sue Ryder's evidence submission to the Public Administration and Constitutional Issues Select Committee – Parliamentary and Health Service Ombudsmen report Dying without Dignity (pdf)

Sue Ryder welcomes the opportunity to comment on how issues raised in the Parliamentary and Health Service Ombudsman report Dying without Dignity can be addressed.  he publishing of this report was timely, following the release of the Health Select Committee’s report into end of life care. This increasing focus on end of life care - especially quality and choice - is encouraging and vital to securing long-lasting reform.
Three issues underlie all of the failings that have been highlighted in the key themes of the report. Sue Ryder feels that tackling these can provide solutions to improving palliative and end of life care for patients.

The Scottish Parliament is holding an inquiry into palliative care and in particular on how to ensure the difficult conversations about death and dying happen at the right time and are then acted upon accordingly.

We've focused on two particular challenges: the inequalities in access to palliative care for people with neurological conditions and other conditions other than cancer, and the need to improve communication around palliative care.

We hope that the Parliament's Health and Sport Committee reflects our concerns in its final report, and that the Scottish Government in turn acts on these when it publishes its new strategy for palliative care in Scotland.



We are delighted that the Committee has launched this inquiry at a critical time in the development of end of life and palliative care, with the introduction of the Five new Priorities for Care, a new proposed funding mechanism, and two reviews into choice and inequality.




The NHS Constitution sets out the basic rights that patients and staff are entitled to. The Government wants to update this document and consulted on its proposed changes.

We supported the changes, particularly the intention of putting patients more clearly at the heart of everything that the NHS does and the inclusion of end of life care as an area where patients have specific decision-making rights.

We are concerned that local authorities are not developing or investing in appropriately planned and specialised care services for those with more complex needs and conditions. We hope that duties in the draft Bill that make local authorities responsible for promoting a diverse market will help to address this. 

This response focuses on clause 3 and the duty on local authorities to promote diversity and quality providers, and clauses 9-12 on assessments.



The CQC (Care Quality Commission) is the independent regulator of health care and adult social care services in England. It consulted on the fees that the providers that it inspects would have to pay from April 2013 onwards.

In our response, we expressed our concerns that the strategy and proposals would disadvantage large charitable providers of health and social care, as they would impose a large financial and administrative burden on us.

Under the new NHS arrangements, a National Tariff for all providers of NHS services has been introduced. This consultation looked at whether the arrangements for objecting to Monitor’s proposed pricing methodology were suitable.

We welcomed the general intention that the proposed pricing system will support movement towards a fairer playing field for providers, as this is something that we have been campaigning in favour of for some time.

The CQC (Care Quality Commission) decided to consult its stakeholders about its proposed strategic direction for the next three years.

We asked it to build stronger relationships with voluntary sector providers such as Sue Ryder and to ensure that its work and processes are transparent.


This consultation looked at the proposals to ensure that certain essential NHS services will be able to continue even if a provider fails. If ‘Commissioner Requested Services’ include services provided by charities then we have serious concerns about the likely implications for those providers, as the draft conditions appear to conflict with charity law.

Sue Ryder welcomes the development of a nursing vision. The challenge will be ensuring that the responsibility for delivery lies with leaders across the nursing and care professions. 


NICE’s (National Institute for Health and Clinical Excellence) draft quality standard for dementia contained 13 statements which we supported with some minor suggestions for improvements. We also pointed towards Sue Ryder’s dementia helpline at the Chantry as an example of best practice.

This consultation was about ensuring that commissioners procure NHS services in a fair and transparent way that benefits patients. We supported the principles underlying this consultation and were particularly pleased to see an emphasis placed on transparency.

We raised serious concerns in response to this Department of Health consultation looking at the processes surrounding the new NHS providers licensing regime, arguing that the proposals could place a large administrative and financial burden on charities and that the proposed conditions relating to Commissioner Requested Services might conflict with charity law.

The opportunity for commissioners of health and care to collaborate in Health and Wellbeing Boards and develop a Joint Health and Wellbeing Strategy (JHWS) for the local community is a key step forward to ensuring the most appropriate services that meet an individual’s outcomes are designed.

This consultation looked at the licence conditions that NHS providers (including Sue Ryder) will need to meet under the new providers licensing regime. We expressed serious concerns about the suitability of the conditions for charitable providers.

The opportunity for commissioners of health and care to collaborate in Health and Wellbeing Boards and develop a Joint Health and Wellbeing Strategy (JHWS) for the local community is a key step forward to ensuring the most appropriate services that meet an individual’s outcomes are designed. 


We support the principle of shared decision making and no decision about me, without me. We are disappointed, however, that this consultation paper does not offer detail on the structural change and implementation process needed to put the policy into practice. 



The draft report sets out ten key recommendations for hospitals and ten key recommendations for care homes to help them tackle the underlying causes of undignified care, as well detailed recommendations on the changes the Commission believes need to take place across the wider health and social care system.

Intrinsic to the strategy’s success will be whether it correctly identifies, and meets the needs and experiences of disabled people.  We hope that an integrated disability strategy will be supported by a robust framework which will ensure its implementation and can be used by disabled people to hold the government to account.

Partnership for Excellence in Palliative Support (PEPS) is the provision of 24-hour support and coordination of palliative care across Bedfordshire.

We welcome this guidance; however, it is important that it clearly sets out the content of data in the JSNA to ensure it is as robust, inclusive and representative as possible.



Sue Ryder’s experience of providing services across the continuum of care makes us well placed to make policy and practical recommendations to the Future Forum about how the integration agenda could be progressed.

We believe the Future Forum should set out key principles of integration. For Sue Ryder, these include ensuring care is person centred, improves outcomes and works across service silos, departments and providers.