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Long Term Plan – What Carers UK wants to see changed for carers

26 September 2018 by Emily Holzhausen

Emily Holzhausen

Director of Policy and Public Affairs

NHS England has the potential to drive and deliver real and concrete changes for carers, setting goals that are ambitious but achievable in their long term plan for the NHS which is being developed now.  However, they need the vision and the concrete actions in the plan that will deliver the change that we need to see.

Over the next 10 years, Carers UK estimates that 20 million people will start caring and roughly the same number will cease caring[i].  The value of the support provided by carers is a staggering £132 billion, equivalent to spending on the NHS.[ii]  However, this is not without costs to the carer’s own health and wellbeing, ability to work, income, etc. which is widely documented.

In just 10 years, we’ve seen the number of carers rising fast, by some estimates up to 8 million.[iii]   And the amount of care that families are providing has been increasing year on year since the 1980s.[iv]    This is outstripping population ageing and growth as families are hit with the increasing tightening of service provision across health and social care.   Caring brings health risks, too.  72% of carers providing substantial care have experienced poor mental health as a result of caring and 61% of carers responding had experienced poor physical health as a result of caring.[v]  The more people who are carers, and the more caring they do, increases ill-health and associated risks amongst the population.

Caring also increases risks to the ability to work, and this, in turn leads to poorer social determinants of health – lower incomes, greater risks of ill-health due to poverty and stress. Carers are amongst the groups most likely to experience isolation and loneliness, further impacting on poor health. [vi]

The NHS does not systematically identify carers throughout the whole NHS ecosystem.  NHS legislation is framed around the patient.  Carers do not appear in any legislation around health that involves services.  Because practice follows policy which follows the law, carers say they are often ignored and invisible.

Local areas do have good identification in parts of the local health and care economy which we have highlighted e.g.  Surrey and Leeds.  However, this is not consistent across every part of the NHS.  A carer’s journey is also rarely tracked across all parts of the NHS and across to social care. This needs to change.

For the long term plan to succeed, and particularly for England’s 5.7 million carers[vii], we need a significant step up in the approach from NHS England.   Carers need to be separately identified at every stage through the NHS journey across all settings.   This is critical to ensure that data is collected, carer experience of services is clearly monitored and their own outcomes evaluated against health, ability to work, wellbeing, knowledge and resilience around caring, etc.  This is to ensure that we have objective evaluation and a robust basis for continuous service learning and improvement.

Carers UK’s goals for the NHS Plan are clear and are firmly rooted in carers’ priorities, where thousands of carers have fed in their views and engaged with us about what they want to see.  Carers UK wants to see the NHS develop to become the most carer friendly health service in the world.   We also want it to be the most carer friendly health employer in the world – setting the bar high, but achievable.  Finally, we want don’t want carers to feel alone and isolated.  We want carers to know NHS is looking after them if they are caring for someone who needs support because of illness and disability.

In our paper, we have set out the precise goals that we want to see achieved and how this might be done in delivering the long term plan.  Throughout all of our recommendations and goals we have to see a change in the way that technology is used – everything from information sharing between professionals so that carers don’t have to repeat information, or stop negative health outcomes because information has not been transferred, read or shared between professionals – to increased use to digital and tech to better support families and friends who care and to smooth the caring journey. 

The timescale for input in this part of the process is short and finishes on 30th September.  The NHS Long Term Plan is expected to be published in November 2018, with a longer engagement period between October through to March 2019.

Anyone can submit their views to the process, too - https://www.engage.england.nhs.uk/consultation/developing-the-long-term-plan-for-the-nhs/

Carers UK has set some goals that we want to see achieved by the NHS based on the views of over 6,000 carers.  We think that the NHS should build the most carer friendly health service in the world – for carers they support, and for the staff working in the NHS who are juggling work and care. 

We believe that this is achievable if the following are stated and delivered through the NHS Long Term Plan:  

  • Clear recognition and respect for what carers do, and a choice about caring.
  • Clear measures that specifically relate to carers of all ages, including younger and older carers.
  • Carers need to be systematically identified in all NHS settings, primary and community care, as well as acute care and positive steps taken to prevent health issues from developing.
  • Quality measures needs to be implemented in primary care and an ambition to move to this in acute care.
  • Giving carers the right training, learning and equipment – including technology - at the right time to be able to care safely and welly, and
  • Measures to include carers systematically at hospital discharge and ensure they have the right support.
  • Increased take up of public health measures by carers so that they have an equal chance of protecting their own health.
  • Increased breaks provision to improve health and wellbeing.
  • Increased support around medication management, and understanding about key areas e.g. nutrition.
  • Increased contingency planning for emergencies.
  • Better transfer of information across health and social care, so that carers don’t have to repeat information
  • Support to decrease carers’ isolation and loneliness, including support to the voluntary sector to provide those services.
  • An increased recognition and use of digital and technology and clear understanding of how it can improve carers’ lives.
  • Clear measures to support staff working in the NHS who are juggling work and care, including paid care leave of between 5-10 working days.

Carers UK will be engaging with NHS England at all stages of the plan and we will be updating our input as this develops.

 

[i] Based on estimates that every year 2 million people becomes carers - Carers UK (2014) ‘Need to know – transitions in and out of caring: the information challenge’

[ii] Carers UK and the University of Sheffield (2015) ‘Valuing Carers 2015: the rising cost of carers’ support’

[iii] Social Market Foundation, supported by Age UK and Carers UK (2018) ‘Caring for carers’

[iv] Carers UK (2015) ‘Facts about carers’

[v] Carers UK (2018) ‘State of Caring 2018’

[vi] Office for National Statistics (2018) ‘Loneliness - What characteristics and circumstances are associated with feeling lonely?’

[vii] Based on estimates of the number of carers in England in 2015 - Carers UK and the University of Sheffield (2015) ‘Valuing Carers 2015: the rising cost of carers’ support’

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