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We all look in different places. We have found the best place to get advice is from others who are in the same or similar situation as you. Pop over to see our friends at the Mobilise Community where you can speak to others facing similar issues.

The Citizens Advice Portal has a wealth of information for Unpaid Carers, or you can visit the NHS Carers Page.

If you are Employed, Self Employed or Unemployed and care for someone for more than 35 hours per week, you could be entitled to Carers Allowance.

Carers Allowance is deducted from other means tested benefits so check your eligibility first on the Carers Allowance Unit webpage. You can apply for Carers Allowance by completing the online form, or by printing the DS700 form and sending it to the Carers Allowance unit.

There are also other benefits you may be eligible for, use the Turn2Us checker tool to find out more.

Carer breakdown is one of the leading causes of emergency admissions, residential placements, and preventable harm. Carer Breakdown Support refers to the practical, immediate help available when an unpaid carer reaches physical, emotional, or situational crisis -  the point where caring becomes unsafe, unsustainable, or impossible without intervention.

In a crisis the first step is to contact your local authority, you can find out who it is by finding your local council

Direct Payments are funds provided by local authorities that allow carers or cared‑for individuals to arrange their own support instead of relying solely on council‑commissioned services. They offer flexibility and control, enabling families to tailor care to their specific needs.

Direct Payments can be used for:

hiring personal assistants
purchasing respite care
accessing specialist support
arranging community activities
buying equipment or services that meet assessed needs

Carers may receive Direct Payments if they have eligible needs identified through a Carer’s Assessment. The amount varies depending on local authority policy and the level of need.

Emergency Planning is one of the most important forms of preventative support for unpaid carers. It ensures that if a carer becomes suddenly unable to provide care due to illness, accident, hospital admission, or any unexpected event, the cared‑for person remains safe, supported, and protected.

Government guidance emphasises that carers should have access to:

clear information
contingency planning
replacement care arrangements
formal recognition within emergency response systems

Some local authorities already operate contingency‑plan systems where carers can pre‑record emergency contacts and instructions, enabling social care teams to activate support immediately when needed. These plans prevent crisis escalation, safeguarding risks, and emergency admissions.

NUCUF’s Emergency Planning tools are designed to make this process easier, faster, and more reliable for carers across the UK.

NUCUF provides a complete emergency‑planning system designed specifically for unpaid carers. These tools ensure that emergency services, social care teams, and crisis responders can access the right information immediately.

Formal Recognition means unpaid carers are acknowledged as holding a defined role within health, social care, and community systems. It ensures carers are not treated as “visitors” or “family members,” but as people performing an essential duty that must be identified, recorded, and included.

Recognition gives carers a clear status: someone with responsibilities, insight, and a legitimate place in conversations about the person they support.

What it establishes

The caring role is officially acknowledged by professionals.
Carers are named and recorded in care settings.
Carers are included in discussions, decisions, and planning.
Carers are treated as partners in care, not optional extras.

Why it matters

It prevents carers from being ignored or excluded.
It creates consistency across hospitals, GP surgeries, and social care.
It supports identity tools like NUCUF’s CIS numbers and Priority Pass.
It reinforces the idea that caring is a recognised role, not an informal favour.

Grief is a constant, often invisible part of unpaid caring. Carers experience living grief as their own life, identity, health, and opportunities shrink; anticipatory grief as they prepare for decline or future loss; and system‑induced grief when services fail, dismiss, or ignore them. This grief is real, ongoing, and rarely acknowledged by professionals. Recognising it helps carers understand that the emotional weight they carry is not weakness — it is the natural human response to relentless responsibility, uncertainty, and love.

Below are a few links to support networks that can help.

Cruse Bereavement Support - phone and online support for carers facing terminal illness or decline
Marie Curie Bereavement Service - moderated forums for people experiencing ongoing or anticipatory grief
Sue Ryder Online Bereavement Community - including grief before bereavement
Mind — Coping with Grief (including grief before bereavement)
Compassionate Friends - for carers of children
Local Carers Centres - many offer grief groups or counselling

Unpaid carers often put their own health and wellbeing last, not because they want to, but because caring responsibilities make it difficult to prioritise rest, medical appointments, exercise, or mental wellbeing. Health & Wellbeing recognises that carers need support to stay physically healthy, emotionally resilient, and connected to services that understand the pressures of caring. This includes GP carer registration, health checks, mental health support, lifestyle advice, and access to wellbeing programmes that help carers maintain their own stability while supporting someone else.

There are a wide range of talking therapies (counselling services) which include; Mind, Carers UK and NHS services.

Isolation is one of the most widespread and damaging experiences for unpaid carers. Caring responsibilities often remove people from social circles, employment, hobbies, and community life. Isolation isn’t just being physically alone — it is the emotional separation that comes from living a life few people understand, where conversations, routines, and priorities no longer match those of friends or colleagues. Carers may feel cut off because they cannot leave the house, cannot share what they are going through, or because others withdraw when caring becomes “too heavy.” Isolation is a structural outcome of unsupported caring, not a personal failure. Recognising it helps carers understand that connection is a need, not a luxury.

Here are a list of peer to peer forums you may be interested in:

Mobilise - Daily online meet‑ups for carers who cannot leave home
Carers UK - A moderated community where carers connect, share experiences, and reduce isolation
Mind - Guidance on coping with emotional isolation and rebuilding connection
Samaritans - For moments when isolation becomes overwhelming
You can also contact the Samaritans on 116 123 or by email jo@samaritans.org.uk 

Justice for unpaid carers means fairness, accountability, and lawful treatment across every system they interact with. Carers routinely face injustice: exclusion from decisions, denial of information, unsafe discharges, ignored safeguarding concerns, and organisational failures that leave them carrying consequences they did not create. Justice recognises that carers deserve transparency, respect, involvement, and remedies when systems fail.

NUCUF exists because justice for carers is not optional — it is overdue.
NUCUF provides a national voice, structured advocacy, policy challenge, and a platform for carers to expose systemic failures and demand lawful, ethical practice. Justice is not only about rights; it is about restoring balance in relationships where institutions hold all the power and carers hold all the responsibility.

Here are a few links for carers to be able to understand their rights better, and how they can ensure they are being respected:

Care Act 2014 - Legal rights, assessments, and entitlements for carers
Carers UK - Workplace protections, legal rights, and how to challenge unfair decisions
PALS (Patient Advice and Liaison Service) - For NHS complaints, concerns, and justice when treatment or communication fails
Local Authority Complaints Procedures - For challenging social care decisions, failures, or unlawful exclusion
Ombudsman (LGSCO & PHSO) - Independent investigation when councils or NHS bodies cause injustice
Local Government Ombudsman
Parliamentary & Health Service Ombudsman
VoiceAbility - Support for carers facing unfair treatment or complex systems
Equality Advisory Support Service (EASS) - For discrimination, unfair treatment, or breaches of equality law

Key Information refers to the critical details that unpaid carers must keep organised, accessible, and ready for use across health, social care, emergency services, and crisis‑response situations. When this information is missing or scattered, carers face delays, repeated questioning, unsafe discharge decisions, and increased stress during emergencies.

A well‑prepared Key Information Pack ensures that professionals can immediately understand the cared‑for person’s needs, the carer’s role, and any risks that must be managed.

Carer Identification Number (CIN)
The CIN allows agencies to recognise the carer instantly and understand their circumstances without repeated explanations.
Emergency Plan
Clear instructions for what should happen if the carer becomes suddenly unable to provide care.
Medication List
Names, doses, timings, and any critical notes (e.g., “must not miss”, “requires supervision”).
Medical Conditions
Diagnoses, behavioural risks, triggers, allergies, and communication needs.
Professional Contacts
GP, social worker, district nurse, mental‑health team, school SENCO, or other professionals involved.
Emergency Contacts
Family, neighbours, or trusted individuals who can step in during crisis.
Daily Routine Notes
Essential tasks that must be completed to keep the cared‑for person safe.
Access Information
Door codes, key‑safe numbers, or instructions for responders (if applicable).

This information prevents delays, reduces safeguarding risks, and supports safe emergency decision‑making.

NUCUF Tools for Managing Key Information

NUCUF provides several tools that make storing and accessing Key Information simple and reliable:

Emergency Plan Envelope
A clearly marked envelope designed to hold all essential documents in one place.

Emergency Location Sticker
Placed near the front door to tell responders exactly where the Key Information Pack is stored.

SOS Tap‑for‑Plan NFC Card
Allows responders to instantly access emergency information using a phone.

CIS Wristbands
Wristbands link directly to the carer’s CIN and emergency details, ensuring rapid recognition.

All items are available at:
www.nucuf.com/shop.html

Lifeline and telecare systems provide 24/7 emergency support for people who may be at risk due to disability, frailty, illness, or cognitive conditions. These systems allow the cared‑for person to call for help instantly if the carer is asleep, out of the home, or suddenly unable to respond.

They are a key part of keeping carers safe, reducing pressure, and preventing avoidable emergencies.

Most systems offer:

- Pendant alarms (worn around the neck or wrist)
- Fall detectors
- Home sensors (door, movement, bed‑exit)
- Smoke and carbon‑monoxide alerts
- GPS trackers for people who may wander
- 24/7 monitoring centres that can contact:    

* emergency services
* family
* carers
* local responders


Carers can access Lifeline systems through:

local councils (search: “ lifeline service”)
housing associations
telecare providers
hospital discharge teams
community health teams

Multi‑Agency Working means hospitals, social care, GPs, mental‑health teams and carers all communicate.
In reality, carers are often ignored, dismissed, or treated as “optional”.  If you care for someone, your voice must be heard in every decision about them.

Here are some practical steps that you can take to make sure that you are not excluded from decision making when it comes to the people you love.

1.  Tell the ward you are the Primary Carer — immediately Don't say family member, the person who helps, involved in care, YOU are the care.  Use the exact phrase “I am the Primary Carer. I need to be involved in all decisions.”
2. Demand to be added to the patient’s record Insist on admission that your name, your relationship, your phone number, your role as primary carer is recorded on the patients hospital records. Ask that a note be left on the record stating: “Must be consulted before any discharge or care decision.”
3. Use the phrase that stops them ignoring you I am [X] Carer and “I hold essential care information that you do not have.”
4. Ask for a “Multi‑Disciplinary Discussion” (MDD) This is the hospital’s formal process for getting everyone in one place; doctors, consultant, nurse in charge, discharge team and Social Worker (if one is involved). You don't need to know the lingo when you are in the meeting, that can be explained, simply say “I want a Multi‑Disciplinary Discussion. I need everyone involved in one conversation.”
5. Be forceful but not threatening NHS Settings have ZERO TOLERANCE for any act that they deem as aggression. You must be prepared to stand your ground without being threating or abusive, this will get you removed. Instead be forceful. Insist that you speak to the Nurse in Charge or the Ward Manager immediately. Tell the Nurse In Charge or the Ward Manager “I need urgent escalation. I am the Primary Carer of [X] and I am being excluded from decisions regarding their care”
6. Be prepared to put your complaint in writing In some cases when the above fails, you will need to escalate the matter to the ombudsman, but 9 out of 10 times, the above steps work.

Nina’s Law is a proposed legal right for disabled people who rely on essential care. It demands that when a disabled person is admitted to hospital, their family and trusted carers, the people who know them best must be allowed to support them and continue providing the care that preserves their dignity, safety, and emotional wellbeing.

Nina’s Law is named after Nina P, a disabled mother living with Primary Progressive Multiple Sclerosis (PPMS). Nina relies on familiar carers and her family four times a day for essential support. When she was admitted to hospital, these people were blocked from entering the ward leaving her frightened, vulnerable, and without the people she trusts most.

Nina’s Law demands that disabled patients retain their dignity, autonomy, and continuity of care during hospital admissions.

What Nina’s Law Would Guarantee

1. Family Access
Guaranteed access for family and essential carers at key times, for key tasks, and for key decisions.
2. Essential Carer Access
Trusted carers — paid or unpaid — who provide daily intimate care must be allowed onto the ward to continue supporting the patient.
3. Continuity of Care
Disabled patients must not lose access to the people who understand their routines, communication needs, triggers, risks, and personal boundaries.
4. Dignity Protection
Patients must not be left without the familiar support they rely on for personal care, feeding, mobility, and emotional reassurance.
5. Safety
Essential carers and family must be allowed to prevent avoidable harm caused by unfamiliar staff or rushed hospital routines.
6. Equality
Disabled patients must not be forced into unsafe or undignified situations simply because hospitals operate rigid access rules.

Why Nina’s Law Matters
For disabled people who rely on familiar care, hospital admission is terrifying.

They lose:

- the people who understand their body
- the people who know their communication style
- the people who keep them safe
- the people who preserve their dignity
- the people who advocate for them
- the people they trust

Nina’s Law would end this.

It would ensure that disabled patients are not left without the very people who make their daily life possible.

Visit and sign Nina's petition on change.org

Observation Rights are the proposed legal protections that allow a disabled person’s family and essential carers to be present during key moments of hospital care. These rights ensure that the people who know the patient best can observe, support, and speak up when something is unsafe, undignified, or incorrect.

Observation Rights are not about being at the bedside 24/7.

They are about structured, protected access at the moments that matter.

What Observation Rights Would Guarantee

1. Right to Be Present During Key Care Tasks
Family or essential carers must be allowed to attend:
feeding
mobility support
communication‑critical interactions
personal‑care dignity moments (if the patient requests it)
distress episodes
procedures the patient finds frightening

This is not 24/7 access — it is targeted presence.

2. Right to Observe and Raise Concerns
Carers must be allowed to:
watch care being delivered
identify unsafe practice
alert staff immediately
request adjustments
provide essential information

Hospitals cannot treat carers as “interfering”, they are safeguarding the patient.


3. Right to Be Present for All Major Decisions
Carers must be included in:
care planning
risk assessments
discharge decisions
medication changes
safeguarding discussions

This prevents dangerous decisions being made without the people who know the patient best.

4. Right to Provide Essential Information
Carers must be listened to when giving:
communication needs
behavioural triggers
mobility risks
feeding requirements
personal‑care preferences
emotional‑support needs

Staff must record and use this information.

5. Right to Protected Access
Hospitals must create a simple, consistent process that allows carers to enter the ward at key times without being blocked by:
shift changes
visiting‑hour rules
staff misunderstandings
bureaucratic barriers

This is structured access — not open access.

Personal Care Protocols are a formal, legally recognised set of instructions created by the disabled person and their carers. They outline exactly how the person must be supported during hospital admission, ensuring continuity of care, dignity, and safety.

These protocols travel with the patient.
They cannot be ignored.
They cannot be overridden without clinical justification.
They cannot be replaced by generic ward routines.

When disabled people enter hospital, staff often:

* don’t know their routines
* don’t know their triggers
* don’t know their communication needs
* don’t know their mobility risks
* don’t know their feeding requirements
* don’t know their intimate‑care boundaries
* don’t know their emotional needs
* don’t know what causes distress
* don’t know what keeps them safe

Which leads to an extremely stressful experience, one that can be traumatic and distressing for the patient.

Quality Time is the part of caring that never appears in assessments, care plans, or government statistics but it is often the most important part of the relationship between a disabled person and their carer.

Below we have included some links that will help you find activities that you and your cared for can do together, enabling you both to interact with other carers and cared for in a safe and accommodating setting:

Carers Trust Network: Enter your postcode to find closer activities to you.
Check for local authority activities by entering your postcode to find your local authority, access their webpage and search for Community Directory, Local Offer  or Adult Social Care Activities
 Contact National Age and Disability Charities: you can use the Age UK activity finder by entering your postcode and clicking search.

It is also extremely important for carers to get a break from their role - Their are a network of organisations who provide discounted or free away days and weekends. Find your nearest away day by using the links below.

Carefree Space: Provide 1 - 2 night hotel breaks all across the UK.  

Many people care for a loved one for months or years before they realise they’re an unpaid carer. This “recognition delay” is one of the biggest reasons carers miss out on support they’re entitled to.

You may be doing full‑time care but not receiving any financial help.
You may not know about workplace adjustments or flexible working.
You may not be linked into local support, advice, or emergency planning.
You may not realise you can ask for a Carer’s Assessment.

It can take a carer up to 3 years before they realise that they fulfil the eligibility criteria to be registered as an unpaid carer.

Here are 4 easy steps to help you find the support you need.

1. Carers UK – “Am I a Carer? - Provides information you need to establish whether you are an unpaid carer.
2. Local Carer Support Organisations - registering as a carer triggers help, search for your nearest organisation with the Carers Trust lookup tool.
3. Council Carer’s Assessment - opens the door to practical support, find your local council webpage and search "carer support"
4. NHS GP Carer Registration - adds you to their carer record for health support

Below we have created a list of the services that most Unpaid Carers will come into contact with at some point on their carers journey.

We have identified the service, what Key Actions they partake in and Who to escalate to if things go wrong.

Adult Social Care (ASC)

Use when:
The cared‑for person needs support, equipment, adaptations, or care hours.
You need a Carer’s Assessment.

Key actions:
Request assessment in writing.
Ask for the decision, rationale, and timescale.
If delayed, escalate to the Duty Team.

Children’s Social Care (CSC)

Use when:
Caring for a child with disabilities or complex needs.

Key actions:
Request a Child and Family Assessment.
Ask for short breaks, equipment, and direct payments.
If delayed, escalate to the Duty Team.

GP

Use for:
Medical information
Medication reviews
Letters supporting your caring role

Key actions:
Request a Carer Flag on the GP record.
Escalate to your local ICB
Ask for written confirmation of caring responsibilities.

Hospital Teams

Use for:
Discharge planning
Travel‑cost support
Ward‑level escalation

Key actions:
Ask for the Named Nurse and Consultant.
Escalate to your local ICB
Request a Carer‑Involved Discharge Plan.

Local Welfare Assistance (Council)

Use for:
Crisis funding
Food
Utilities
Emergency essentials

Key actions:
State the crisis clearly.
Provide evidence of caring responsibilities.

Benefits and Income Support

Use for:
Carer’s Allowance
Universal Credit carer element
Disability benefits for the cared‑for person

Key actions:
Use specialist advisers for complex cases.
Request mandatory reconsiderations in writing.


Housing Team / Housing Association

Use for:
Rent arrears
Unsafe housing
Adaptations
Priority banding

Key actions:
Provide medical evidence.
Request a Housing Needs Assessment.

Independent Advocacy

Use for:
Complaints
Escalations
Meetings where you need support

Key actions:
Request advocacy under the Care Act.
Ask for representation at safeguarding or MDT meetings.


Safeguarding Adults / Children

Use for:
Risk to the cared‑for person
Risk to you as the carer

Key actions:
Report concerns directly to the safeguarding team.
Request written outcomes and next steps.

Community Mental Health Team (CMHT)

Use for:
Deteriorating mental health
Crisis support

Key actions:
Request a carer‑involved care plan.
Ask for crisis numbers and escalation routes.

Immediate Crisis - Dial 999  or Call NHS111 on 111 in a non-urgent crisis.

Use for:
Risk of harm
Breakdown of caring arrangements

Key actions:
Contact emergency services or crisis teams.
Inform ASC of imminent breakdown.

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