It will come to many of us- a disability we have had from birth, the result of an accident or illness (mental or physical), or just the ageing process- and we need help doing the things that others do for themselves.

But large numbers of people in our district are not getting the help they need with daily living, and there is very little help easily available if they want to find out what they are entitled to or how to challenge a decision on their help.

The Guardian newspaper reports Age UK as saying that 1.4 million people are not getting the care they need.  It could be help with eating, dressing, bathing, keeping clean or other essential needs.  In the Lewes district council area we have a greater  proportion than normal with these sorts of needs.

This article tells you what you or those close to you could get help with, how to avoid problems, and how to get help if you think a decision is wrong.

The rules are slightly different for children needing care.  This article focusses on adults, but some of it will be useful for people with children with care needs.


The main responsibilities for this sort of care are with the NHS and the East Sussex Social Services department.  Both these organisations have been cut and cut by central government and long term care is one of their more expensive budget items.   So it is not surprising that decisions that save money are taken, whatever the law says.

Things are made worse because there are so few places that will help people negotiate with the system or defend their rights. In part this is because the main bodies that fund the sort of organisations that might mount a challenge are the NHS and Social Services, and they don’t want to do this.


Here are some examples of things that can go wrong (not all taken from East Sussex)

The hospital tells you “There is nothing that we can do for your relative, you must find them a care home and pay care home fees”:

Not necessarily.  If you have medical needs the NHS must often go on meeting them free of charge.  This may include the cost of a nursing home or nursing in the person’s home. This is called NHS continuing care.  Failing this there is usually the right to 6 weeks of free intermediate care. No one should be discharged from hospital without a care plan agreed with the person and social services, unless they have recovered to the extent that they do not need care.

You phone up social services and they tell you on the phone that there is no point applying for help because you won’t get any, or that they just can’t help.

Everyone who is brought to the attention of social services as possibly needing care must be given a written assessment of their care needs and how they can be met.  If you disagree with this you can challenge the decision using the council’s complaints procedure  People who care for others can also have their needs assessed and met.

You get an assessment that says that you or your relative has fewer needs than you think right, or you disagree with the way they think your needs can be met.

You can challenge the decision using the council’s complaints procedure

Social Services decides to give you less help than it did before.

This used to be quite common, every time the council had a budget cut.  It is normally no longer possible unless your needs have changed because the government has changed the rules. You can challenge the decision using the council’s complaints procedure

Social services says that you are too rich to get services through them, or that you must pay a proportion of the cost.

Unlike NHS care, Social services can charge for what you get unless your income is quite low, so they will assess the income of the person needing care, or any partner living with them.  They will also look at your savings.  If you have savings of just over £23,000 they will not pay for care.  But you can still ask the council to sort out your care, even if you pay for it yourself, and councils often get their sums wrong, by ignoring the extra costs the person may have because of their disability, or by assuming that when you spent any large sum of money years ago, it was to avoid having to pay for your care. You can challenge the decision using the council’s complaints procedure

Social services says that they must organise your care, or that you must organise your own care using money that they will pay you, or that you must have a prepayment card to organise your own care.

Many people prefer to organise their own care, employing the staff they want, but others find this too onerous.  It is your choice which you go for.  If you decide to organise your own care they may tell you that you must have a pre-payment card, which is only redeemable in a limited number of ways.  You do not have to have this. You can challenge the decision using the council’s complaints procedure

These are just a few of the issues that can arise?


If you have a medical need then that should normally be provided by the NHS without charge (except for prescriptions and similar charges)

If social services are assessing your care needs then you are eligible for help if you need help because of a condition or illness with AT LEAST TWO OF THE FOLLOWING:

  • Managing and maintaining nutrition: the assessor will look at whether you are able to prepare and eat food and get enough to drink to maintain nutrition.
  • Maintaining personal hygiene: the assessor will consider your ability to dress, wash yourself and clean your clothes.
  • Maintaining toilet needs: your assessor will take into account your ability to get to and use a toilet.
  • Being able to move around the home safely: the assessor will look at your ability to live in your home safely, such as getting up steps, using kitchen facilities or getting into the bathroom
  • Maintaining a habitable home environment: the assessor will consider your ability to keep your home clean and safe and that it has necessary amenities.
  • Developing and maintaining family or other personal relationships and having sufficient contact with other people.
  • Engaging in work, accessing training and education or taking part in volunteering: your assessor will consider whether you are able to be active in your community through work, training, education or volunteering subject to your own wishes
  • Using facilities or services in the local community including using public transport and recreational services: your assessor will consider your ability to get around in the community safely, to use leisure facilities, or attend appointments.
  • Carrying out any caring responsibilities you may have for a family member: your assessor will consider any parenting or other caring responsibilities you may have.

(For fuller details have a look at any of the guides listed below)


It is all very well having this information, but most people want help tackling large organisations. Lewes Eye does not have the expertise to advise

The Eye has contacted a large number of local organisations and has only found two that could give any advice about your care rights and how to challenge decisions.


Click on the office you would like to visit on the left hand side of the page.


Older people only

Neither of these organisations has specialists in NHS care community care or other care issues but they do have access to the law and maybe able to help you get some idea of what you can do and how you should do it.

For anything more complicated they are likely to refer you to somebody else.  They are likely to refer you to one of the organisations below:

SEAP In our area SEAP will  only help you with complaints you want to make against the NHS.  But this is not the same as disputing an assessment of your health care needs.  A complaint may take months to resolve.

POhWER The law says that social services must provide people with advocates if they have no one else who can advocate for them.  In this field you might think that this is everyone, but in fact it excludes anyone who has someone who can pick up a phone or write a letter for them.  So the only people who might come into this category are the ones who are least likely to find an advocate.  The organisation providing advice and advocacy to people who have no one to act for them in East Sussex is POhWER, who will require a referral from a social worker or, possibly Citizens Advice or Age UK.  A couple of people the Eye contacted did not have a very high opinion of POhWER, but this is anecdotal.


Solicitors are expensive.  So they should be your last port of call, but, given that a wrong decision could cost you thousands of pounds, you may consider it worth it.

There are only two solicitors in our area that the Eye has been able to find who offer community care advice and advocacy:

 Lawstop   which has offices Brighton and London. They do work under the legal aid scheme. (However you cannot get legal aid if the person needing care and their partner,(if any) have income of over about £32,000 a year or savings of £8,000

There are other solicitors doing Legal Aid work in London on this subject. You can find them at

Martin Searle Solicitors This firm has offices in Brighton and Eastbourne and has built up a considerable amount of expertise in community care law over many years.  But they do not do legal aid work, so you will be paying.  They do have quite a lot of free advice on their web site.


A number of national charities offer phone advice or advice on line.  So it is worth contacting any charity that covers the illness or disability that the person needing care has. 

Smaller charities tend to have less expertise, whilst larger ones are more likely to have useful information.  Charities dealing with groups of people who are likely to have particular issues with community care, such as the Alzheimers Society or mental health charities are likely to be particularly useful

Here are some publications the Eye has found useful:

The Disability Law Service  London based charity that has built up a considerable amount of knowledge about these issues. Most staff are volunteers. Will advise any community care customer

Contact for families with disabled

MIND  particularly aimed at people with mental health problems but good for anyone of working age.  A plain English guide.

HFT, for people with learning disabilities or autism, but good for anyone of working age

The Alzheimers Society has a number of publications that you can download. Their material on NHS continuing care is well worth reading for anyone who thinks they might be eligible, even if they do not have alzheimers.


The Disability rights guide  is an excellent guide to benefits available to people with disabilities and also has a section on community care. The 2019 edition costs £35.

Community Care and the Law is the probably the definitive work on its subject but it costs £65 and is not a light read.


This article is intended to point you in the right direction.  You should not rely on it as your sole advice.  The Lewes Eye is not a community care expert.

Article written 13/3/2019