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Health and Care Bill 2021/22 - Carers UK campaign to safeguard and improve carers’ rights in the NHS

Introduction:

The Health and Care Bill, currently passing through Parliament, takes away some carers’ rights at the point of hospital discharge.  It also includes new involvement provisions, but misses an opportunity to improve carers’ rights within the NHS where carers tell us their needs are often overlooked.

While the Bill as introduced by Government introduces important new rights for carers to be consulted and involved by certain NHS bodies in certain instances, we are concerned that it also takes away important rights at the point of hospital discharge and doesn’t go far enough to systematically identify and support carers. That’s why we are campaigning to both safeguard and improve carers’ rights in the passing of the Bill.

For more information, please see our detailed briefing on the Health and Care Bill (updated: December 2021). You can also see our latest campaign updates at the bottom of this page.

If your organisation would like to support our campaign, please sign up here.  

Background:

Our NHS and social care systems depend heavily on carers, who provide the bulk of all care, in supporting people with long term conditions and disabilities. Carers often play numerous roles simultaneously; administering medication, supporting daily activities of life such as eating, drinking, dressing, moving, supervision and cognitive support, through to more complex and specialised nursing care. Carers’ own health is also often directly impacted by their caring role, and they are twice as likely as non-carers to have ill-health because of caring. 

Despite the essential role carers play, carers themselves are not systematically identified, supported or included throughout the NHS – unlike in social care, where they have parity of rights. The lack of recognition and support for carers throughout the NHS – despite of some good practice – hinders healthcare outcomes, and disrupts integrated working across our health and care systems.

That’s why we believe that the Health and Care Bill is an opportunity to improve carers’ rights within the NHS where their needs are often overlooked – to ensure they are properly identify, supported, and included by healthcare professionals throughout the NHS and Social Care.

We welcome parts of the Bill:

Having left carers out of the original Health and Care White Paper, Carers UK has already successfully encouraged Government to include some important new provisions to consult carers, including placing a new duty on NHS England to ensure that carers are consulted and involved in their commissioning processes, and a new duty on the newly proposed Integrated Care Boards to consult and involve carers in public consultations and to consult carers, where appropriate, in the prevention, diagnosis and treatment of patients.  

Specifically, we have particularly welcomed:

  • The Duty on NHS England to consult carers (Clause 6)
  • The Duty on Integrated Care Boards to consult carers around planning and commissioning and around services relating to the patient for prevention, treatment and diagnosis (Clause 20)
  • The introduction of new powers for the Care Quality Commission to assess local authorities (Clause 137).

We are calling for the Bill to be reinstate carers’ rights and improve them:

However, we are concerned that the Bill removes key aspects of carers’ rights at the point of hospital discharge. Carers UK regards this as a negative step which we are calling to be instated in the Bill.  The Government is also missing an opportunity in the passing of this Bill to systematically identify carers throughout the NHS, and also removing key aspects of carers’ rights at the point of hospital discharge.

Specifically, we are calling for the Bill to be amended so that it:

  • Does not take away carers’ rights in relation to hospital discharge.
  • Places a duty on the NHS to have regard to carers and to promote their health and wellbeing.
  • Ensures the definition of carers in the bill includes young carers and parent carers.
  • The new cap on care costs that the Government is legislating for fairly protects the assets of those on moderate incomes

For more information, please see our detailed briefing on the Health and Care Bill (July 2021).

Join our campaign:

We will be working to achieve the above goals and we would like to have as many organisations as possible to support our campaign. 

Please sign up here if you wish to support our campaign.

Campaign progress updates:

February 2022:

Committee Stage for the Health and Care Bill in the House of Lords took place in January and February 2022. During Committee Stage debates, Peers across all parties raised concerns about the removal of carers’ rights at the point of hospital discharge and the lack of definition of ‘carers’ within the Bill. Peers also pressed the Government on the fact that the Bill does not take the opportunity to place new duties on the NHS to identify carers and promote their health and wellbeing, which would be a major step forward for carers. Carers UK has been campaigning with Peers to bring forward these amendments, including ensuring that young carers are recognised within the Bill, along with parent carers. We have also been working with Barnardo’s and Caring Together, to ensure that young carers are considered at the point of hospital discharge. Carers UK will continue to raise these issues with Peers at the next stage of the Bill which is Report – which will commence on 28 February 2022.

December 2021:

Second Reading took place in the House of Lords. Carers UK briefed peers ahead of the debate and a number of peers raised our concerns In the debate.

Autumn 2021:

Committee Stage for the Health and Care Bill in the House of Commons took place between September and November 2021. Carers UK’s proposed Clauses to amend the Bill – (1) relating to the needs of carers, and, (2) calling for the term ‘carer’ to be clearly defined – were debated by MPs having been tabled by the Opposition, but were ultimately withdrawn.

July 2021:

The Health and Care Bill was introduced to Parliament in July 2021 and had its Second Reading in the House of Commons on 14 July 2021.

March 2021:

In March 2021, Carers UK submitted evidence to the Health and Care Select Committee, who ran an inquiry focussed on the White Paper and future Health and Care Bill. We had previously expressed our strong disappointment that when Government published its original Health and Care White Paper, carers were not included at all. Later in March, our evidence was raised by the same Committee when the Secretary of State for Health and Social Care was questioned.

The Chair of the Committee, Rt. Hon. Jeremy Hunt MP, also wrote to the Secretary of State on behalf the Committee about unpaid carers. The response from the Secretary of State said that unpaid carers would be considered in the Bill, and that some areas would appear in guidance. We welcomed this and some areas have since been addressed in the Bill. The new hospital discharge guidance has also been published which includes provisions around carers which align with the Care Act 2014, which are welcome – but these provisions do not compensate for or replace the rights that will be lost if the Bill is passed as currently drafted.

The Health and Social Care Committee also recently published its first report on the government’s proposals, and we were delighted to see that they had included all of our recommendations. Specifically, the report said:

  • ‘It is deeply concerning the White Paper does not mention unpaid carers…the NHS should have a responsibility to have regard to carers and to promote their health and wellbeing.... this should be included in the Bill'.
  • ‘…that provisions to protect carers’ rights on discharge [should] also be included in the Bill’.
  • ‘…that a duty be placed on ICS boards to ensure that carers have representation’.
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