Quality of care

Most of us have little or no experience of the care sector until, one day, we need it. And when we do, it is often at a time of crisis, when we can be feeling emotional.

It is often difficult to know what to expect, and we often hear from people worried that they are expecting too much.

Mostly, they are not.

A care home provider should be there to support you and your family. They should be transparent about the service they provide, including you, and those that support you, in your care planning and provision.

They should also help you stay in contact with your community so that you don’t become isolated or cut off.

Person centred care is exactly what it says on the tin!

It is care that is personal to you and built around your wishes, preferences and needs, designed with your involvement and consent.

It should include your personal care needs, while also supporting you to engage with your family, friends and community. It should also take into account your cultural or religious needs and whatever else is important to you.

This is set out in the regulations governed by the Care Quality Commission, the sector regulator. See, for instance, under the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014:

Regulation 9, Person Centred Care

Regulation 10, Dignity and Respect

Person centred care is also required by the Human Rights Act, the law which ensures services respect our rights and treat us as individuals.

Many people needing care experience the onset of mental illnesses such as dementia. This can make it difficult to make decisions or communicate effectively.

However, the main principle of the Mental Capacity Act, is that a person should be considered to have capacity unless it can be shown otherwise.

Even if you find it difficult to make decisions on more complex issues, such as where to live, you may still be able to choose what you want to eat or what you would like to wear.

You must be supported to keep your own autonomy as much as possible on a day to day basis.

Thinking ahead

If you have made an Advance statement for when and if you lose mental capacity, to set out your wishes and preferences around your care and medical treatments, then this must be included in your care planning. Advance Statement are not legally binding but they can be really helpful to your representative, care staff and medical professionals to understand your wishes and preferences once you are unable to express them yourself. The can help ensure you receive the care and medical treatment you would want should you lose mental capacity to participate in these decisions.

The statement can cover any part of your life, including your end of life wishes.

You can find out more about advance statement here

Someone to speak up for you. But regardless of whether you have capacity or not, it can be difficult to speak up for yourself when you are reliant on those around you. You should be able to choose a family member or friend to advocate on your behalf.

If you are unable to choose someone yourself, then your advocate should be the person who knows you best and is able to support you.

This decision should be made following the best interests decision process set out under the Mental Capacity Act, and should involve your friends and family.

Legally determined advocates

There are also legally set advocates, these include the ones that you have chosen to act on your behalf regarding certain aspects of your life should you no longer be able to. These people are said to have ‘power of attorney’ and may include an Attorney for Health & Welfare and an Attorney for Finance. If you have not chosen an attorney through a Lasting Power of Attorney, the Court of Protection can award this role to an appropriate person if necessary.

Your support group

As different family members, friends or attorneys may have different roles in supporting you, a care provider may need to engage with more than one person when working with you to make a decision. It may be that the provider needs to engage different people depending on the decisions needed.

So for instance, you might have given one relative Power of Attorney for your finances, but may prefer another to act as your advocate. Or if you are unable to make this decision, after a best interests decision, it could be established that a relative who has been your main carer, and supported you in visits to the hospital etc, is best placed to advocate on your behalf for your care needs.

Paid advocates

If you have no one to represent you, then you may be entitled to a professional advocate (paid for with public money). For instance, you may be allocated an Independent Mental Capacity Advocate to represent your needs under the Mental Capacity Act. Or a Care Act advocate to support you with decisions about your care. If you have a mental health issue you may be entitled to an Independent Mental Health Advocate.

Care homes should never set limits on who they will contact or engage with on your behalf, and should always act either under your direction and wishes, or in your best interests under the Mental Capacity Act.

Your care home is your home. Your wellbeing and autonomy should be central to how staff support you.

Regulation 10, Dignity and Respect (in the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014), requires the home to support relationships that are important to you.

Similarly, the Human Rights Act, Article 8, ensures a right to family life.

Both Regulation 10 and Article 8 also require the home to support you with staying involved in your local community.

Your care plan should include things about you, like your hobbies, as well as activities you enjoy – and it should describe how you will be supported to continue these activities.

Your health

If you need support to go to hospital, dental or optician appointments, the home should support you. That means help with arranging appointments as well as helping you to get there.

Care home staff have a responsibility to work with other professionals to ensure all your health care needs are met. This includes referrals for equipment, such as wheelchairs and mobility equipment, if you are eligible.

Extra costs

In some instances, the care home may be able to charge extra for some types of support. This includes things like providing someone to go with you to a dental or outpatients appointment.

Their policy around extra charges should be made clear before you have moved into the home or, if that was not possible, as soon as you move in.

Support with getting to your appointments

Whether you are going to hospital as an emergency, or making a planned trip to the dentist, the home should support you with all the information the healthcare staff might need, as well as any personal belongings you might want or need during the trip.

For instance, going into hospital as an emergency, the home should ensure you have an overnight bag, your medication, and any information about your medication, as well as glasses, hearing aids and dentures, if you use them.

These items should be labelled, both on the items themselves and the boxes they are stored in, to ensure they do not get lost.

All these items are sometimes referred to as your ‘red bag’.

f you need a staff member to go with you, they should know who you are and what your needs are, and the symptoms of the medical situation, so that they can support you when communicating with healthcare staff.

Personal care is defined under Regulation 2 (of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 as assisting with eating and drinking, washing, dressing, toileting, oral care and care of skin, hair and nails.

(Although, some nail care will require specialist support, for instance those with diabetes.)

Personal care should be tailored to your needs and wishes, and should have respect to your personal choices and cultural needs (Regulation 9 Person Centred Care), your dignity and autonomy (Regulation 10, Dignity and Respect), as well as your consent (Regulation 11, Consent)

This means that you should be able to choose when to get up, what you wish to wear, when to go to bed or wish to eat. Care homes are not hotels or institutions and should not set rigid times for residents. They should be flexible to meet residents wishes, routines, and cultures.

Care home providers must not take short cuts in care, particularly where these increase a health risk, cause distress and/or loss of dignity, such as requiring you to rely on incontinence pads rather than supporting your independence by using a toilet or commode.

Those of us with more complex needs, and who may no longer have the ability to understand care needs and the consequences of refusing them, may find routine care such as washing or brushing our teeth difficult to tolerate. Staff should be aware of how to support you with this care. There are lots of techniques that are proven to work and lots of help out there for care homes to turn to for advice and support, not least your family and friends who know you best.

Equally, it is important to know when and how to gain support if you refuse care, to avoid harm through neglect.

Eating and drinking are not just essential for our health, but also enjoyable and sociable activities, so be sure to demand what are called ‘protected meal times’.

As set out in Regulation 14 (of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014), your preferences and cultural needs should be catered for and you should be able to choose what you wish to eat, where you wish to eat and, if necessary, with the support of a family member or friend who knows your preferences.

Your care plan should also record these preferences, and what you do not like, along with any allergies or medical needs. This is also the case if you need support to eat and drink, to ensure you are given this support safely and appropriately.

Respecting the way you want to eat

Maybe you have always eaten your main meal later in the day or, perhaps you have not been feeling well, and were unable to eat your dinner but are hungry later and would like something to eat. In both cases the provider should be able to arrange this for you.

If you have particular dietary needs, due to difficulty in swallowing, food should be prepared thoughtfully and carefully to ensure it remains appetising.

Prompting you

If you need reminding and prompting to eat and drink, it is important that this is carefully monitored to ensure that you do not become dehydrated or suffer from malnutrition. These are very serious conditions that can cascade to other health problems if undetected.

Assistance aids are various tools that can help you see, hear or eat.

As many of us get older, we can find it harder to hear or see, and we may become reliant on hearing aids and glasses.

We also lose teeth and need bridges and dentures to help maintain our mouths and our ability to eat.

Other health problems, such as arthritis or dementia, can make it harder to manage things like glasses, dentures and particularly hearing aids.

Any help with assistive aids that you might need should be documented in your care plan so that staff can assist you.

Care staff should help you to keep these items clean, in working order and readily available to you. This is important for your wellbeing and independence, but it is also about supporting you to communicate, eat well and take part in the life of the care home. Your rights as an older and/or disabled person are protected under the Equality Act and the Human Rights Act.

Mouth care

Care of your dentures, or help with mouth care is part of your personal care, as well as important to your health. Poor mouth care can result in pain, but can also limit your ability to eat, drink and communicate. It can also cause other health problems.

It is important that staff know how to support you and what to do if you are in pain and need extra help, for instance from a dentist. If you are unable to communicate your problems, then staff should be able to recognise when you need care.

Help with seeing

Poor sight can make it harder to communicate and enjoy hobbies and activities. It also raises the risk of falling and can lead to isolation. It is important for you to have the support you need to keep your glasses clean, wear them and keep them safe. If you find it hard to remember where your glasses are, or put them down regularly, then ensuring your name is on them, as well as your glass case, can enable them to be quickly identified. You should regularly see an optician to ensure your prescription is kept up to date.

Your environment is also important. Things like lighting can help or hinder sight. Staff should ensure the lights are strong enough and in the right place.

Help with hearing

Supporting your hearing is essential to maintaining your independence, wellbeing and overall health. This will ensure you can communicate socially but also make informed decisions about your care and wishes.

Staff should help you manage hearing aids, ensuring they are clean, and working, including the batteries. They can be easy to lose so it is important for staff to know how long you like to wear them, where you might put them down, and where they should be kept when you are not using them. This is made more important if you are unable to make these decisions for yourself.

Marking hearing aids and the box they are stored in, with your name can help staff keep track of them.

It is really important to replace hearing aids that are lost, as it can be difficult as you get older to readjust to wearing them. Your home should know who to contact to arrange this, including your representative and the NHS hearing aid provider.

Extra help with hearing and sight impairments

If you have problems hearing and seeing, then you may be eligible for an assessment by a specialist from your local authority adult social care department. They can recommend changes in your care to ensure you have the right support. Your care home should ensure that you have access to this as part of your person-centred care.

End of life and dying can be difficult to talk about, but it is important to make sure that people know the type of care you want and who you want to have contact with at this stage.

We need to have this conversation early on, as exactly when a person might pass is hard to predict. We all know a person who died unexpectedly, or someone else who lived well beyond their doctor’s expectations. This is why ‘end of life’ is categorised as the final year of life.

When you move into a care home, you (and your representative, where relevant) should be asked about your end of life wishes, to ensure that you get the care and support you wish for.

Your wishes should be reviewed on a regular basis to ensure that the record is kept up to date.

End of life planning includes:

• The types of medical intervention you would prefer, such as having palliative care in the care home rather than going into hospital

• Whether you wish to be resuscitated, referred to as DNAR (Do Not Attempt Resuscitation) or DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) decisions

• Cultural and religious needs that are important to you

• People you care about being able to be with you

• Who and when someone should be called in case of a deterioration in your health.

You may need support with making these choices.

For example, with medical decisions, such as resuscitation, either your GP or the hospital should have a conversation with you about what it means, as a way of helping you to make decisions.

Similarly, if you are unable to take part in end of life planning, or need extra support, these decisions and discussions should always include your personal representative or advocate. If you have made an advance statement about the care and medical intervention, then this should be included to inform your end of life care and be followed wherever possible. If you have made a Living Will setting out any medical care that you do not wish to receive, your attorney/ representative and medical professional must follow your wishes.

Do Not Attempt Resuscitation decisions (DNAR)

Do not resuscitate orders are signed by a medical professional, usually your doctor, after discussing and agreeing with you or your representative that this is in your best interest. This should only be signed if you do not wish to be resuscitated or that the medical professional believes that resuscitation would not be successful.

If you disagree with the medical decision that resuscitation would not work, then you can ask for a second opinion.

DNAR or DNACPR’s only relate to cardiopulmonary resuscitation and should not prevent you receiving any other type of medical intervention. It is also not legally binding but a guide to other health professionals.

If you have made an Advance Decision (Living Will) and requested not to be resuscitated, then this wish should be followed. If you have made an Advance Statement, then you wishes should be followed wherever possible when making a DNAR decision.

You can find out more about DNARs here.

Living Wills or Advance Decisions.

In England and Wales Living Wills are legally binding documents and give you the right to refuse any medical treatment you have specified. It will not give you the right to state the medical treatment you would want. If you lose capacity and have made a Living Will, then both the medical professionals and your Attorney for Health (if you have one) must follow this.

You can find out more about Living Wills and how to make one here

Your care needs may change and fluctuate over time, possibly due to ageing or health problems. For this reason, your care should be regularly reviewed through conversations with you, and your representative or advocate if appropriate.

Regular reviews ensure that your care remains appropriate and reflects your wishes and needs as required under Regulation 9 Person Centred Care (see Person Centred Care section above).

However, changes in your care needs don’t necessarily work to a timetable! So any changes, either expressed by you or noted by staff, should be recorded, triggering a review.

For instance, a decrease in mobility, or a fall, might trigger a fall risk assessment. This would look at your mobility aids, along with any additional support you might need. You and/or your representative should always be involved in these reviews.

Needs beyond what the care home can cope with

In a very small number of cases, your care needs might exceed the ability of what the care home can provide.

But before asking you to find a new home, the care home should be able to clearly show how your care needs exceed their services, as registered with the regulator (the Care Quality Commission).

They also need to follow the termination clauses in your care contract. If they do not do this, then the other party in the contract, either you or a statutory authority, has the option to challenge the notice.