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Caring for a parent

Seeing a parent struggle in later life is always difficult. You instinctively want to help, but it can be hard to know where to start.

It's important to open up conversations around plans for the future. There are lots of ways to keep living independently for longer, such as equipping the home (i.e. technology, handrails) or arranging alternative living arrangements.

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We can find ourselves gradually taking on more and more responsibility. It can start with small jobs – helping with the garden, doing their shopping - and over time it becomes more intensive. Adjusting to these changing roles can be a big emotional step for you and your parent. It can be especially difficult if personal or intimate care is needed, or if you live a distance away from your parent and can’t get over to see them often. There can be so many practical things to consider – such as when to get professional help. It’s also important not to overlook your own interests like your job, family, friends, and maintaining a social life.

"Throughout my life Mum's been there to look after me; even after I got married she was around to help me and support us. Now the tables have turned and it's my turn to look after her."


Don’t delay – talk now

Avoid putting off these conversations until there’s a crisis; if you act now, you can avoid making life-changing decisions under pressure. In addition, your relative may no longer have the ability to express their wishes if they have lost mental capacity. Find out more about this here.

"If I could start this journey again, I would have tried to find out more and much earlier. I would have considered that he might have other problems as he got older, just like anyone else, and not just dementia. Perhaps this would have made me better prepared for the decision I had to make about his care."

If you have siblings, it’s also worth discussing together how you could share the caring responsibilities between you.

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How to broach the subject

It can be really difficult to know how and when to start the conversation, so we have put together some tips to make it a little easier:

  • Try to talk one-to-one when possible so they don’t feel overwhelmed
  • Having face-to-face conversations allows you to show your support with body language and eye contact
  • If you need an ice-breaker, making a cup of tea is always a good start
  • Bring up examples of other people’s similar situations to open up the conversation
  • Share your thoughts on what your own preferences on maintaining independence would be
  • Be aware of the language you use; make suggestions rather than dictating and ensure it’s a two-way conversation so that they feel listened to

"Communicating exactly what you want of people can be helpful – leaving nothing to chance. It also applies to shouting the loudest to get support from professionals.

"Often things that I thought were obvious and self-explanatory were far from obvious to others. If you’ve really made it crystal clear what you want, then it’s hard for someone to say they didn’t understand. Often that means facing difficult conversations head on and not beating around the bush."

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More ideas

Why not visit the Carers UK forum - our friendly online support community for carers. The forum is available 24/7 and you can get instant access when you join Carers UK - membership is free.

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NHS Continuing Healthcare

What is NHS continuing healthcare?

In England, Wales and Northern Ireland, if a person has a disability or long-term complex medical problem, they might qualify for a package of social care arranged and funded solely by the NHS called NHS continuing healthcare (CHC). Not many people yet know about it. 

In Scotland there are different care arrangements called Hospital Based Complex Clinical Care.

Who is eligible for NHS continuing healthcare?

NHS continuing healthcare is for adults. To be eligible the care needs for the person you are caring will need to be assessed by looking at the following.

  • what help they need
  • how complex their needs are
  • how unpredictable their needs are, including any risks to their health if the right care isn't provided at the right time.

If the health of the person you are caring for is rapidly getting worse, ask about a fast track assessment to bypass the initial screening.

How do I apply for NHS continuing healthcare?

To apply for NHS continuing healthcare, ask your GP or social worker to arrange an NHS continuing healthcare assessment.

What happens during the assessment?

The person you are caring for will be assessed on general health and care needs with a checklist that will cover:

  • Mobility
  • Breathing
  • Continence
  • Communication
  • Nutrition (food and drink)
  • Skin (including wounds and ulcers)
  • Psychological and emotional needs
  • Altered states of consciousness
  • Symptom control through drug therapies and medication
  • Cognition (everyday understanding of what’s going on around you)
  • Other significant care needs

If the initial screening shows that the person you are caring for might be able to get NHS continuing healthcare, they will need to have another assessment.  It will be carried out by a team of two or more health- and social-care professionals who are involved in their care. They will use the same checklist above but will go into a lot more detail.

Where can I get further help with NHS continuing healthcare assessments?

The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice.

Visit the Beacon website or call the free helpline on 0345 548 0300.

Hive Link

We’ve been working with Hive, one of the world’s leading smart home providers, to change the world of caring. Together, we’ve created Hive Link, a new smart service that helps families look out for their loved ones from wherever they are in the world.

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Over a million people already use Hive products and services everyday across the UK. You may know them best for their award winning smart thermostat, they design smart products and services that connect your home to make daily living easier and give you peace of mind wherever you are – all through their smartphone app.

Together, we’re delighted to be launching a new smart service that helps families look after their loved ones from wherever they are.

It’s called  Hive Link.

This short video brings Hive Link to life, and shows how it can make such a big difference to the lives of both you and your loved ones:


How Hive Link works

Hive smart devices fit easily and seamlessly into your loved one's home and work in the background to get to know their morning and evening routines, or if the front door has been left open longer than usual. If your loved one isn't following these usual routines, then we'll send a message to your smartphone to let you know. 

You can see what's happening in real-time in the activity log on your smartphone or tablet, so you get the reassurance you need if you can’t be there regardless of whether you’re at home, at work or out and about.

Together, we’re changing the conversation on caring and Hive Link means that the next time you do pick up the phone to speak to your loved one, it can be more about catching up and less about checking in.

For more information on how Hive Link works and how it can benefit both you and your loved ones, download our easy guide below.

Introducing Hive Link - leaflet
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What Hive Link can do for you

Daily reassurance at a glance

When you can’t be there in person, the daily activity log shows what’s happening in real-time, like when your loved one opens the front door or boils the kettle for their morning cup of tea. 

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Stay in the know from anywhere

If your loved one is not following their usual routine in the morning or at night, or if the front door has been left open longer than normal, you'll get a notification sent straight to your smartphone wherever you are in the world.

Sharing the caring

If there are other family members, friends or neighbours looking out for your loved one, you can set up a Circle in the Hive app to share the care with family and friends so when you're busy or away they can receive notifications, check the activity log and help out if needed.

Getting started is easy

Hive work in partnership with British Gas, and with more than 8,000 expert engineers, nobody knows British homes like they do. One of their trained experts will set up Hive Link in your loved one’s home, fully personalising the service to ensure it fits in with their home and their routine.

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FIND OUT MORE AND GET STARTED TODAY

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What Hive Link can do for your loved one

See it as a safety net

While your loved one is going about their day, Hive Link is there in the background to give you both a little extra reassurance when you can’t be together.

Love living at home

Hive Link helps your loved one to enjoy living at home, on their own terms. This means that when you do speak to them it can be more about catching up, and less about checking up.

No need to change a thing

Hive Link doesn’t involve cameras and there’s no need for your loved one to wear anything which gets in the way, or change anything at all about their usual routine. Hive Link just works away in the background, always ready when needed.

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FIND OUT MORE AND GET STARTED TODAY

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Key things to know

What does my loved one need to do?

Nothing. The only thing we ask of them, is to give their signed consent for Hive Link to be set up in their home before installation takes place. The British Gas engineer can talk both you and your loved one through this consent during their visit.

Is Hive Link secure?

Hive are completely committed to safeguarding customer data, and they take this responsibility very seriously. There are robust measures in place to keep all data safe and further details can be found here

Who will install Hive Link?

Nobody knows British homes like British Gas and one of their trusted engineers will install Hive Link in your loved one's home. Their expert engineers are specially trained to install Hive Link, and many of their 8,000 engineers have also undertaken ‘Dementia Friendly’ training to help protect and support some of their most vulnerable customers.

You also don't need to be a current British Gas or Hive customer to use Hive Link.

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Carers UK and Hive

Hive is part of the Centrica family, one of our leading corporate partners, with whom we are working closely to raise awareness of the challenges facing carers in the UK and to support carers.

The launch of Hive Link is one of many initiatives we will be working closely together on, to ensure carers get the support they need. You can find out more about this partnership here.

A mutually supportive relationship

We have worked closely with Hive in the development of Hive Link, and we are very excited to have used our knowledge and experience of the challenges facing carers to help shape this initiative that will give carers reassurance and will enable those they support to stay at home independently for longer. As a thank you, Hive is donating 5% of the first 12 months service charge to us, for every customer who joins Hive Link via the Carers UK website.

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Complaints and Challenging Decisions

This section contains information on making complaints and challenging decisions.

Making a Complaint

The NHS, local authorities and health and social care partnerships in Scotland follow a two-stage complaints procedure. You can find details of the organisation's complaints procedure on their website, or by contacting them directly. 

Stage 1: Frontline resolution

if you are unhappy with the services you have received, you may be able to solve this informally. You can make your complaint in person, by phone or email to the manager of the service you are complaining about. The main focus should be on resolving the complaint to your satisfaction. You should receive a response about your complaint within 5 working days. If you are happy with the outcome, your complaint is now complete.

However, if you are not happy, or your complaint is too complicated to be dealt with informally, it can move to the next stage.

Stage 2 – Investigation

If you are still unhappy you can ask the organisation to take your complaint to Stage 2. You should receive a response within 3 working days to let you know that the complaint has been recorded. Staff will then investigate the situation and have to get back to you within 20 working days. If the situation is very complicated you might be asked to accept that it will take longer than 20 days for the organisation to decide what to do. If you are happy with the decision reached the complaint is closed.

Stage 3 - Scottish Public Services Ombudsman

If you are not happy you can take your complaint on to the Scottish Public Services Ombudsman (SPSO). They have a range of information about how to make a complaint.  This can be found by visiting their website at: https://www.spso.org.uk/complaining-spso

 

Challenging Decisions

Our fellow national carer organisation, MECOPP, have produced "Challenging Social Care Decisions in Scotland: A legal guide" authored by by Tim Haddow, Advocate

This is part of the work of their 3 R’s Project, MECOPP’s Self-Directed Support Legal Rights Project. One of the aims of the 3 R’s Project is to build the capacity of third sector organisations which provide support to individuals who are entitled to self-directed support under the Social Care (Self-directed Support) (Scotland) Act 2013. This guide is part of that work.

You can download a copy of the guide by clicking the "download PDF" icon on the right or by clicking here.

You can also contact the 3 R's Project directly for advice. The 3 R’s Project will assist any individual with social care support needs and carers to realise new rights and entitlements to self directed support.  You can find out more about self directed support at the "My Support, My Life" website

It will also helps third sector organisations which provide support to individuals who are entitled to self-directed support. 

The 3 R's project can provide you with:

  • advice and on your legal rights under self-directed support, human rights and equalities legislation
  • undertake casework on your behalf to support resolution of more complex issues
  • refer you to legal organisations if resolution cannot be reached

To find out more:

What resources are included?

The Digital Resource for Carers brings together a wealth of content to ensure carers have access to useful information and advice on key areas.

These include:

Health & Wellbeing

In this section carers will find resources to help support their own physical and emotional health and wellbeing as well as information…

Read more

Support for caring

Caring for someone can be valuable and rewarding, but without the right support caring can have health, financial and social impacts. This section includes a range…

Read more

Technology and caring

This section focuses on how technology can support care and caring. Resources include…

Read more

Financial planning

This section helps carers think about financial planning and gives them tools and information to get started. Resources include…

Read more

Working and caring

This section aims to support carers who are juggling work and care, thinking of leaving or returning to work. Resources include…

Read more


The resources are hosted on a tailored, joint-branded webpage specifically designed for the exclusive use of your service users.

Health & Wellbeing

In this section carers will find resources to help support their own physical and emotional health and wellbeing as well as information about supporting the health and wellbeing of the person they look after.

Resources include:

  • E-Learning: The role of good nutrition when caring for someone: an e-Learning course that aims to help carers understand the role of nutrition both for themselves as well as the person they are looking after.
  • Spotlight on nutrition: Essential reading guides on the role of nutrition and hydration, including a series of guides focusing on specific conditions and offering information on how to provide a balanced diet when caring for someone with cancer, COPD, stroke and dementia.
  • Looking after your health: Resources about how to seek support from your GP, get enough sleep, care for your back, cope with stress and depression, cope with difficult feelings and more.
  • Taking a break: Information and factsheets on taking a break.

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Support for caring

Caring for someone can be valuable and rewarding, but without the right support caring can have health, financial and social impacts. This section includes a range of resources to support carers.

Resources include:

  • E-Learning: About Me: building resilience for carers: a resource that helps carers identify and build networks of support and promotes their self-care.
  • Upfront guide to caring: This is a simple tool for carers who are new to the maze of benefits and entitlements.
  • Looking after someone - information and support for carers: our guide for anyone caring for family or friends. The guide outlines carers’ rights and gives an overview of the practical and financial support available.
  • Being Heard: a guide to self-advocacy for carers: Carers UK’s self-advocacy guide helps carers navigate a confusing system, get their message across and cope with complex thoughts and emotions when they are caring.
  • Factsheets and practical support for carers: Our factsheets break down the complex issues simply and accurately so that carers can get the full picture of the support available and how to get it.
  • Atlas of caregiving: An Atlas CareMap helps you understand a person’s care ecosystem, showing who cares for whom, and how.
  • E-Learning: Young Adult Carers: This course offers information and advice for young carers aged 18-24 years.

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Technology and caring

This section focuses on how technology can support care and caring.

Resources include:

  • Jointly: Developed by Carers UK, Jointly is an innovative mobile and online app (web, iOS, Android) that is designed by carers for carers. Jointly makes caring easier, less stressful and more organised by making communication and coordination between those who share the care as easy as a text message.
  • Technology and caring resources: Technology can help carers be more efficient, reduce unplanned visits or hospitalisation, take some of the worry out of caring and give you and the person you care for more independence. We have produced a range of resources to help carers understand how technology can them and the person they look after, including our guide Supporting carers with technology offering lots of useful information about how to access and pay for technology as well as what types of technology can be relevant to carers.

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Financial planning

This section helps carers think about financial planning and gives them tools and information to get started.

Resources include

  • Thinking ahead: the cost of care and support: This resource helps carers understand the cost of care and support, the impact of caring on work and the impact of caring on household expenditure and discusses how to manage money and what help might be available.
  • Financial support: Information about entitlements or how to get help with health costs, debt, household finances or pension.

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Working and caring

This section aims to support carers who are juggling work and care, thinking of leaving or returning to work.

Resources include:         

  • Supporting carers at work – a carer’s guide: a guide designed to help carers cope with the pressures of work and care.
  • Requesting flexible working: a step-by-step guide to flexible working and how to make a request.
  • Seeking support: Discusses the range of support both in and out of the workplace, and the different levels of support needed at different times.
  • Thinking of leaving work: Our quick guide explores the options carers have if you thy thinking of leaving work.

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Together we're a supportive community and a movement for change.

How you can help

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With your help we can reach more carers with timely support and advice.

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Caring can be complicated. We're here for you with help and advice.

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