Carers are often involved in the health and wellbeing of the person they care for. This might range from ensuring the person is eating well, to reminding the person to take medication and going with someone to medical appointments.
Carers usually know their loved one’s health and care needs and issues extremely well, but all too often feel that they are not adequately consulted with, involved or listened to by health professionals regarding the care of their loved ones. This can be very stressful and frustrating!
It is important to remember that unless the person does not have the capacity to make decisions, decisions should be made by the person themselves.
Health professionals also have to maintain patient confidentiality, so there will be some restrictions over what they can discuss with Carers or other family members without the consent of your loved one.
Rethink Mental Illness has produced a factsheet for Carers of adults affected by mental illness about confidentiality.
However, this does not mean that you do not have the right to be consulted and listened to, and your valuable insight used to contribute to making person-centered health and care plans that fully meet the needs of your loved one(s).
The Care Act 2014, Children Act 1989, Carers (recognition and services) Act 1995, and Health and Care Act 2022 and the Hospital discharge and community support guidance place duties and responsibilities on the NHS to consult with and to support unpaid Carers.
You should expect to:
- Be recognized and valued as a Carer – usually this includes placing a note or ‘flag’ on patient records that it is you who provides care to your loved one.
- Receive enough advice and information to enable you to care for the person safely and well.
- Receive enough support to protect your own health and well-being, including being told about other sources of support or community resources which may help.
- Be offered an assessment of your own needs (Carers Assessment).
- Be asked about whether you are willing and able to care, the type of care and can provide and have your views listened to and respected.
- Be consulted with and have your views listened to regarding care planning for your loved one(s).
- Be offered a Carer introduction to the service and staff, with a relevant range of information across the care pathway.
- Be involved as early as possible in plans about discharge of your loved one from hospital;
Telling the GP
GPs now have the facility to put a ‘flag’ on both the record of the person you care for and your own record to indicate you provide care for your loved one. You are encouraged to let your GP know you are a Carer. Recording your caring role with your (and the GP of your loved one) can help ensure you are involved as far as possible in decisions and plans for your loved one, and also enable your GP to take the impact of your caring role into consideration when looking after your own health.
Support for Carers from local hospitals
- South West London & St Georges NHS Mental Health Trust
South West London & St Georges have adopted Triangle of Care, a framework of good practice to support the involvement of Carers.
- St Georges University Hospitals NHS Trust
Carers Support Merton has a specialist Carers Needs Assessor to support Carers whose loved ones are in St Georges Hospital, through discharge planning and through the first few weeks at home. If your loved one is in St Georges Hospital or has been discharged in the last three weeks call 020 8646 7515 to receive this additional support.
When the person you care for lacks mental capacity
There are formal ways in which you as a Carer can be included in health and wellbeing decisions when your loved one is not able to make decisions for themselves:
Lasting Power of Attorney (LPA)
LPA is a legal document that lets a person appoint one or more people to help them make decisions or make decisions on their behalf should they lose mental or physical capacity. There are 2 types of LPA: property and financial affairs and health and welfare. The person you care for needs to have created the LPA when they have the mental capacity to do so and LPAs can only be used once they are registered with the Office of the Public Guardian. There are fees to pay on registration of this document.
You can apply to the Court of Protection to become a deputy for the person you care for if they lack the mental capacity to appoint attorneys through an LPA. They may still be able to make some decisions for themselves at certain times but are unable to make a decision at the time that it needs to be made.
You can apply to become someone’s deputy if they ‘lack mental capacity’. There are 2 types of deputy: property and financial affairs deputy and personal welfare deputy.
The court will usually only appoint a personal welfare deputy if:
- there’s doubt whether decisions will be made in someone’s best interests, for example because the family disagree about care,
- someone needs to be appointed to make decisions about a specific issue over time, for example where someone will live.
The government has produced guidance about applying to be a personal welfare deputy.
Transition to adult services
For Parent Carers the transition to adulthood is particularly difficult: