Our starting point
What people expect from health and care services
What do you expect when it comes to managing your health and care? This was the question we asked the public when we started work in 2013.
The result of what people told us is captured in eight principles which help guide our work.
1. Essential services
This represents the way that as a society we ensure every one of us has access to a core set of services.
People told us that essential services probably included: urgent medical treatment, adequate nutrition in any care setting, help with managing a long term health condition and home or personal care to live as independently as possible.
What this could mean in practice
You have the right to be seen by a cancer specialist within a maximum of two weeks from GP referral for urgent referrals where cancer is suspected.
If you are a child at risk of abuse, harm or neglect, your council or health professional should work together with the relevant authorities to make sure your needs are met in a sensitive and supportive manner.
If you are a resident in a care home you have the right to be adequately fed and given help with eating at mealtimes if you need it.
I want the right to a set of essential prevention, treatment and care services, provided to a high standard which prevent me from being in crisis and lead to improvements in my health and care.
2. Access
People should be able to access the treatment and services they need, irrespective of where they live or who they are and have a clear sense of what they are entitled to. People felt that easy and timely access to GPs is particularly important as they are often the gatekeeper for access to other medical services.
What this could mean in practice
If you need to see a GP, you should be able to choose and register with a local practice, and ask to see a particular GP, especially if you want to see one of the same gender.
If you need to use a health service, the health professional should not deny you access, provide you with a lower quality service or discriminate against you because you are disabled or because of your age, religion, ethnicity, sexuality or gender.
If you need social care and are moving from one council area to another, the councils should ensure you have a continuity of support before, during and after you move.
If you are homeless, you are still entitled to register with a GP. You can do so using a temporary address, such as a friend's place or a day centre. You cannot be refused access to GP services just because you are homeless.
Getting appointments at GP surgeries is a joke. They forget we all have jobs. There are no loopholes or ways round it. You just cannot get an appointment.
3. Safe, dignified and high quality service
When people are ill or need care, they should expect high quality services that are safe, will help make them better or make their lives easier.
They should also expect to be treated like a human being, being looked after by people who are compassionate. Those we spoke to felt very strongly about this, pointing out the good and the bad.
What this could mean in practice
If you are in a care home and can't go the toilet alone, staff should offer support in a timely fashion and give you the privacy you want. You should not be left to wet your bed or strain your body while you try to hold it in.
If you have a learning disability and are undergoing surgery, you should expect the specialist to talk to you (if you want them to) about the surgery: what it will feel like, what the benefits might be and any possible side effects. They should do this using language you will understand. They should not withhold any information if you want to know more.
If you receive a health or social care service, you should expect the building to be well maintained, cleaned regularly and contain the equipment needed to support the people using it.
My Nan’s 87, she paid into the system all her life. She’s been out and worked. It’s a basic human right. She needs her toenails cut. You wouldn’t leave a dog in pain. You shouldn’t leave a human.
4. Information and education
People are often keen to manage their own needs and conditions as much as possible. They should have access to the information and education they need to do this.
They should also be told from the outset about the rights they have and be given information about the services they are entitled to receive.
What this could mean in practice
If you have diabetes, you should be able to find out how nutrition affects your condition and you should be given advice on how to manage your diet effectively.
If your dad wants to go into a care home, you should be able to find out about the support he could get from his council, the quality of the services available and what he would be expected to pay for himself.
If the NHS collects any confidential information about you, it should be kept safe and secure. You should be told how information about you might be used and you should be able to request that your confidential information is not used beyond your own care and treatment.
Pharmacists are very good. The pharmacist will correct the GP or tell you to go to A&E if you should do. My pharmacist does talk to my GP to talk about the prescription to check it's ok.
5. Choice
Wherever possible, people should be able to make choices about how and where their treatment or care is provided. Where there are additional paid-for options, people should be told about them.
Not everyone wants to choose. Some people told us they prefer if the choice is made on their behalf, but all of us should be given the option of choice.
What this could mean in practice
If your council has said you are eligible for social care, you should be given the option of choosing different ways of being supported in your own home, rather than being pressured to go into a nursing home.
If you go to your dentist to have a filling replaced, you should expect a high quality service, but you should also be offered paid-for options such as white fillings, even if you will have to pay for this yourself.
If you have been assessed as needing therapy to help you manage your anxiety condition, you should be able to choose who provides this support and whether you get cognitive behavioural therapy or exposure therapy.
Just to be able to know what the options are. You know, ‘this is what’s going to happen’. A lot of the time people get treatment but then they realise they could have done something else.
6. Being listened to
If things go wrong, you should be able to make a complaint and have your feedback taken seriously and action should be taken.
People don’t want to have to complain – they would prefer things are right first time. But when they do complain, they need a system that works and is easy to use.
What this could mean in practice
If your mum is in a care home and you notice that she did not eat any of her food before it was taken away, you would report this to the home manager. You should expect the manager to put things right. The next time food is brought over to your mum, you should be able to see the difference your feedback has made.
If you are worried about the way a consultant treated you, you should be able to easily log it with the hospital and their professional body. They should investigate the complaint and inform you of their findings. If you are not satisfied with their response, you should be able to appeal their decision and refer your complaint to the Parliamentary & Health Service Ombudsman for further investigation.
If you suspect someone is being mistreated in a residential home where your sister also lives, you should be able to register your concerns and have them investigated appropriately. You should not have to worry that your sister’s care will in any way be altered as a result of your complaint.
When my husband became ill I knew straight away he wasn’t right. But because it was me speaking on his behalf, I just got brushed off. I had to get him sectioned and then get help from the crisis team, they were amazing. But I had to fight.
7. Being involved
Often people are experts in their own condition or the condition of people they care for. Their views must be taken seriously by professionals as they can have valuable insight to add.
People are also citizens and part of the wider community. They should be consulted and involved about decisions that affect health and social care services in their area.
What this could mean in practice
If you are a young person with a mental health condition, your ideas, opinions and concerns should be treated on an equal basis with the professionals when planning how you will be supported in the future.
If you are at the end of your life, your family and your doctors should listen to your wishes and make sure you have the support and care you need to die at home, if you want to.
If your council is closing a community centre for older people in your area, they should ask your opinions about the future of the service and keep you updated on what is happening and how your views have affected their decisions.
With my direct payment, I am in control of my care and my life. I choose who comes into my home and what they do to support me.
8. A healthy environment
We live in a society where our health and wellbeing is connected to a wider set of economic, social and environmental factors.
People should have the right to live in an environment that protects their basic wellbeing as well as promotes and encourages good health.
What this could mean in practice
If you are an older person being discharged from hospital, the council and health services should work together to make sure your home is safe and suitable for your needs, making sure any alterations or adaptations are made before you leave hospital.
If you live in a housing association flat, it should not be damp or cold, and your children should not have to share the same bed or bedroom as you and your partner.
If you are a young carer, you should be protected from taking on caring roles which harm you or mean you can’t have the same opportunities to learn or have friendships as other people your age. Adults should get the support they need to make sure you don’t have to take on too much care.
If you want to give up smoking you should find it easy to get the support and information you need to help quit.
If you go to a pharmacy, there’s no information about how not to become sick, you just get medication when you’re ill.
