Carers UK is campaigning to both safeguard and improve carers’ rights within the NHS as part of the Health and Care Bill. Having left carers out of the Health and Care White Paper, Carers UK successfully encouraged Government to include carers in the new structures the Bill creates, but there are also areas where we need to take action.

The Bill introduces important new rights for carers to be consulted and involved by certain NHS bodies in certain instances, but it also takes away important rights at the point of hospital discharge. Carers UK also believes that the Health and Care Bill is an opportunity to improve carers’ rights within the NHS where their needs are often overlooked.

Background:

The NHS depends heavily on the role and input of carers in supporting people with long term conditions and disabilities in the community. 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 specialised nursing care. Carers’ own health is often 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, providing the bulk of all care in support of our NHS and social care systems, carers themselves are not systematically identified, supported or included throughout the NHS – unlike in social care where they have parity of rights. The NHS’s lack of recognition and support for carers hinders evaluation and measurements of effectiveness, as well as integrated working across our health and care systems.

The Health and Care Bill is changing some of the structures around the NHS, CQC responsibilities, and new provisions of social care.  

Carers UK has encouraged Government to ensure that carers were involved and consulted. The Bill includes some important new provisions to consult carers, including a duty on NHS England to ensure that carers are consulted and involved in their commissioning, and a 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.  The inclusion of carers is welcome.

However, the Health and Care Bill, unfortunately removes the important rights of carers at the point of hospital discharge which Carers UK regards as a negative step.

In the Bill we are calling for Government to:

• Keep carers’ rights at the point of hospital discharge, to ensure the carer is supported and the patient is safe to discharge
• Improve the Bill by placing a duty on the NHS to have regard to carers and to promote their health and wellbeing – giving the NHS specific responsibilities to consider carers in their own right
• Introduce new provisions to ensure a sufficiency of supply of breaks services and to strengthen carers’ rights to a break

Carers’ access to breaks is essential to managing their own health and wellbeing and to prevent carer-breakdown. However, carers struggled to access meaningful breaks even before the COVID-19 pandemic, with 44% saying they ‘did not get the breaks they needed’. This situation has only worsened during the pandemic, where 72% of carers have not had any breaks at all.

Campaign progress updates:

When Government published its Health and Care White Paper, carers were not included at all. Carers UK expressed its strong disappointment. 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.

That month, our evidence was raised by the Committee when the Secretary of State for Health and Social Care was questioned, and 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 been addressed in the Bill that we asked for.  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. [hyperlink to guidance]

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’.

The Health and Care Bill was introduced to Parliament in July 2021 and had its Second Reading on 14 July 2021. We will continue to keep this page updated.