Carers handbook contents

• Getting started
• Self Help and Community Support
• Equipment and technology
• Money Matters
• Carer’s Health & Wellbeing
• Carers in Paid Employment
• Talking with Professionals
• Assessments – Asking for Help
• Care Providers and Care Costs
• Planning Ahead
• Children and Young People with Disabilities
• Young Carers and Young Adult Carers

On this page

• Getting your voice heard
• Professional Advocacy services
• Hospital Discharge
• Discharge Jargon Buster

Page last updated 09/05/2023

Getting your voice heard

It is invaluable for a carer to have or to develop good communication skills as they may often have to communicate with professionals about care needs and support.

Explaining the whole picture: care and carer needs

Remember you are the expert in the care of the person you are looking after.  Your insight is invaluable and the level of care you give indispensable; you should not feel intimidated talking to professional people in the care system.   If there are a number of professionals at a meeting they will be representing different services it is not intended to make you feel ‘outnumbered’.

It is important you are able to give the relevant information to help the team of professionals understand the care needs and your concerns.  It is equally important you give relevant information about your own health and additional responsibilities to help all concerned to find care support which will work. 

All too often the carer does not mention their own needs and then any hidden disabilities and responsibilities are not taken into account when considering a care and support plan.

Getting your voice heard is also called self-advocacy. 

Being Heard: a self-advocacy guide for carers is available to download from the Carers UK website and printed copies can be ordered from the Carers UK online shop. The guides are packed with information on carers’ rights, speaking up and looking after your wellbeing. 

Link for >https://www.carersuk.org/help-and-advice/get-resources/being-heard-a-self-advocacy-toolkit-for-carers-uk 

Self-advocacy Guidelines

Self-advocacy is a skill which involves communicating concerns in a way that gives the best chance of getting a positive outcome.

The following points may help;

• Make a note of the date, full name of the person you spoke to and their work role.
• Be specific in what you want to ask for.  Have a list of points you want to say in front of you, this can help you to stay focussed and avoid getting side tracked or from missing something important.
• Outline the facts;

Acknowledge the support offered so far, if it has not helped briefly explain why. Describe the impact of the difficulties on your life – mental, physical and emotional. Give the worst day scenario; if a health condition fluctuates the professional team may not appreciate the challenges you face at the difficult times.

• Avoid being judgemental or making a personal criticism of an individual.
• Repeat in your own words what you understand the other person has said.  This can help sort out any misunderstanding early on.
• Make a note of the key points of the conversation, any important dates, any decisions made and the names of anyone else being consulted.
• If you are unable to speak to a relevant person put your concerns in writing (letter or email) and send it to them.  Keep a copy yourself.
• Be prepared to negotiate for a good outcome;
• When you make your initial request the response may not be to offer you everything you wanted.  Look for any points you agree on, think whether there are any points that are less important to you.  Make sure any compromise you make will still result in a better situation than you had before.
• When you get an answer to your query, thank the person. Everyone likes to be thanked and it might make things better for the next time you need to speak to them.

Professional Advocacy Service

The Care Act 2014 states that the local authority should appoint an independent advocate if a person would struggle to understand things like an assessment, care plan review or safeguarding and does not have an appropriate family member or friend to represent and support them. 

If you need support from another person; help to write letters, complete forms, make phone calls or represent your voice at meetings, a professional advocacy service can help.  South Essex Advocacy Service is an independent charity in Southend providing advocacy for adults. For more information contact, 

Link for > South Essex Advocacy Service Telephone: 01702 340566

Advocacy is taking action to help people:

• Express their views and wishes
• Secure their rights
• Have their interests represented
• Access information and services
• Explore choices and options

Southend Carers can offer advice and make referrals to the support services available.

Hospital Discharge

Each hospital will have its own discharge policy based on guidance from the Government.  The policy is available from the hospital Patient Advice and Liaison Service (PALS) department. Hospital discharge is a regular process for hospital professionals but for the carer and patient it may be a ‘first-time’ or stressful transition that can be full of uncertainties. 

It is important to let the hospital staff know as early as possible if you are a carer or thinking of taking on the role. It is your choice. 

Make staff aware of your own health/care needs or additional responsibilities which may limit the responsibilities you can have as a carer.

Discharge planning starts as soon as the person is admitted to hospital and as a carer you need to be involved.

How to prepare

Ask for the name and contact details of your named nurse.  This person will work with the patient and carer/s to assess the care that will be needed for a successful discharge.

The discharge should not happen before necessary support has been put in place.

The details about the patient’s condition, medication, arrangements for continuing support, aids and equipment are written down in the discharge plan. 

Ask for details of the diagnosis, treatment and prognosis.  This will help you understand what is happening, how it is being treated and what signs and/or symptoms you will need to look for to detect future problems. 

If you would not be able to manage the care needs yourself, the discharge plan will need to consider alternatives;

• professional carers or healthcare staff visiting the home or
• a temporary stay in a care home or rehabilitation unit
• providing additional equipment to help with care needs

If the care needs are primarily health needs a Continuing Health Care Checklist should be completed to identify whether a full Continuing Healthcare Assessment is required.  The outcome of a Continuing Healthcare Assessment is to identify whether the care and cost of care will be covered by the NHS.

Find out from the staff what the care needs will be by asking questions such as;

• Can my loved one go to the bathroom on his/her own?
• Is he/she able to bathe and dress independently?
• Will he/she need medical supplies or equipment?
• Does he/she have any new dietary requirements?
• How can I receive training or help with necessary care? E.g. changing dressings, using a feeding tube or catheter, have IV medications

Ask if any appointments have already been scheduled or if you need to book any further appointments. 

Make sure you have the contact information for any doctors who treated your loved one. 

Find out if the hospital will be sending discharge instructions over to your GP.  You may ask for extra copies of discharge instructions, to keep for your records and for other carers. 

If the person you care for is being assessed or receiving treatment for a mental health condition Carers Trust have produced a booklet explaining the questions you may wish to ask health professionals regarding their assessment, treatment and discharge; 

Link for > menu-of-questions-for-carers-supporting-people-with-mental-health-problems.pdf 

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Discharge Jargon Buster

Professionals can so easily use terms and acronyms which are unfamiliar to the carer.  This is a quick guide to terms used particularly when planning a hospital discharge.

Discharge Care plan – A written record giving details of the patient’s condition, medication, aids and equipment and arrangements for ongoing health support. It should include practical issues including transport needed to get your loved one home.

Medically fit for discharge –  When a person no longer requires an acute hospital bed, but may still require care and support services. The person will be discharged to their own home (where appropriate) or another community setting. 

Assessment care – This includes; Intermediate, Reablement and Step down care.  It should be provided free of charge for up to six weeks (although this can be longer in some circumstances).  There should be another assessment before this ends to determine whether there are ongoing needs for care and support. 

Ongoing support needs which are met by the NHS should be free of charge.  Ongoing support needs met by the local authority may be chargeable.  Equipment may be loaned to you.

Step down/Assessment bed – The principle behind step-down schemes is to move patients from an acute medical setting once they no longer require that level of care. Step-down beds are usually provided by care homes. Often, patients are elderly and not able to return to their own home.  By moving into a step-down bed, this allows further time to make arrangements for their future care without delaying their discharge from hospital.

Intermediate care – A short term package of care provided with the aim of assisting the person you care for to maintain or regain the ability to live independently at home.  Intermediate care may be home-based care services or bed based care away from home such as a temporary stay in a care home or rehabilitation unit. 

Reablement –  is a particular type of intermediate care with a strong focus on helping the person you care for to live independently; learning or re-learning the day-to-day skills needed to encourage self-confidence, support independence and promote healthy living.  Reablement can work well for people who have had a sudden health setback, or who have been discharged from hospital and need some additional support. It could include support from physiotherapists and occupational therapists.

 NHS Continuing Healthcare is a package of ongoing care that is arranged and funded solely by the NHS where the need for care is primarily a health need.  An initial checklist identifies the people that need to have the full assessment of eligibility.  The eligibility criteria are very tight and most people with ongoing care needs will not qualify.

Palliative Care can be provided free on the NHS and is for people who have a health condition which is not expected to be cured by medical treatment. It can take place in a hospice, residential care or the person’s own home.  Southend Carers Hub provide End of Life respite in the person’s home free of charge.