Healthcare Law News

'Barriers' to Dementia Diagnosis

A recent report by MPs and members of the House of Lords has found barriers to dementia diagnosis which result in many patients facing shocking delays for treatment.

Dementia is thought to affect about 800,000 people, with the cost to society estimated at 23 billion. In the next decade, the number with the disease is expected to top one million.

The report by the All Party Parliamentary Group on Dementia was conducted to examine big discrepancies in dementia diagnosis rates after it was estimated that only 43% of people across the UK with the disease had been officially diagnosed with dementia.

Scotland had the highest rate of diagnosis with 64.5%. In Northern Ireland the rate is 61.5% and in England it is 41%. The diagnosis rate is lowest in Wales with 37.4%.

The report highlighted the strong evidence of positive benefits for the sufferer and their families and in terms of financial savings. This is reflected in official government policy across the UK and was reinforced in March by Prime Minister David Cameron setting out his national dementia challenge for England. In which he promised the research budget would be doubled to 66million by 2015. He also said he wanted to see diagnosis and awareness of the condition improved.

Mr Cameron said: "One of the greatest challenges of our time is what I'd call the quiet crisis, one that steals lives and tears at the hearts of families, but that - relative to its impact - is hardly acknowledged. Dementia is simply a terrible disease. And it is a scandal that we as a country haven't kept pace with it. The level of diagnosis, understanding and awareness of dementia is shockingly low. It is as though we've been in collective denial." He added the issue should be treated as a "national crisis".

To tackle the problem, he set out a series of measures, these included the rise in research funding and encouraging the creation of 20 "dementia-friendly communities" where individuals, businesses and the state work together to support people with dementia. The Department of Health will also run a public awareness campaign in the autumn, while hospitals will be given financial incentives to carry out checks on patients to see if they have the condition - just four in 10 patients have a formal diagnosis.

However the report highlights what it calls barriers to diagnosis and treatment, these include poor public understanding of dementia as the report showed a person with dementia often waits more than a year before visiting their GP.

The report says many came also to see GPs as barriers to the diagnosis revealing that some patients had waited over a year for an appointment at a memory clinic. However there are huge variations in access to memory services with some other people reporting only waiting a few weeks. People often received no information or support following a diagnosis.

In addition to the Prime Ministers strategy the report recommends more training for GPs and other health workers, improved accreditation and more investment in memory services.

Jo Webber from the NHS Confederation said that dementia was one of the biggest challenges facing the NHS "It is quite clear that every part of the health service is going to have to adapt to the needs of this growing group of patients from the GP surgery to the hospital ward. We have to be honest and say that we are not there yet."

April 2010: The 'Fit' Note

From 6 April 2010 the sick note is changing to become a ‘fit note’.

Many people with health conditions can, with some basic support from their employer, work as they recover from their condition. This helps the individual because for many people work can help recovery and it also benefits you by reducing sickness absence.

To help more people get the support they need to get back to work the new ‘fit note’ system will mean that doctors can advise that your employee is either:

Unfit for work:
May be fit for work.

A doctor will give a ‘may be fit for work’ Statement if they think that their patient’s health condition may allow them to work if they get suitable support from you. If an employee is too ill to work the doctor will advise this just like with the previous sick note.

The changes are not about trying to get people back to work before they are ready but about removing the challenges to them returning. This is about the employee and your employee working together and being open and honest. Research suggests that in general, work is good for health and the vast majority of employees place a far greater value on it than just their pay. By working together to find an arrangement that suits both parties, you can provide real benefits to both your employee and your business.

Fit for work - The Basics

On the new form, doctors will be able to advise one of two options:

Not fit for work - this means that the doctor’s assessment of your employee is that they have a health condition that prevents them from working for the stated period of time. This is just like on the old ‘sick note’ where the doctor advises your employee to “refrain from work”.

May be fit for work taking account of the following advice - this means the doctor’s assessment of your employee is that their condition does not necessarily stop them from returning to work. For example, they could return to work but may not be able to complete all of their normal duties, or they could benefit from amended working hours.

If it is not possible for you to provide the support for your employee to return to work, you and your employee should use the Statement as if the doctor had advised ‘not fit for work’. Your employee does not need to return to their doctor for a new Statement to confirm this.

What is changing?

The changes to the form allow a doctor to provide more information on your employee’s condition and how they might be able to return to work.

The main changes are:

The removal of the fit for work option;
A new option for a doctor to advise if an employee may be fit for work with some support;
More space for a doctor to provide information on how your employee’s condition will affect what they do;
Helpful tick boxes for doctors touse to suggest common ways to help a return to work.

What stays the same?

The form can still be used as evidence for why an employee cannot work due to an illness or injury;
The Statement is still not required until after the 7th calendar day of sickness;
The information on the form is still advice to your employee. It is not binding on you;
The requirements for the payment of Statutory Sick Pay have not changed; and
Employers’ obligations under the Disability Discrimination Act have not changed.

How can this help your business?

The new option of ‘may be fit for work’ means fewer employees will be ‘signed off’ work when they could possibly do some or all of their job with some support
More information on how your employee’s condition will affect what they do. This will help you have informed discussions with your employee and to do simple things to help them return to work earlier and reduce unnecessary sickness absence; and
Fewer forms to deal with. In the past you may have received the (white) Med 3 form and the (pink) Med 5 form from an employee off work. From 6 April these will be streamlined into one form. The (yellow) Med 10 form, which states a period an individual has spent as a hospital inpatient, has not changed and will continue to be issued for this purpose.

Why change?

Managing sickness absence is a challenge for many employers - the ‘fit note’ is aimed at making it easier for doctors to provide the employer and the employee with simple, clear and practical advice about their fitness for work. This means that, where possible, an employee can help them make an earlier return to the workplace.

The aim of the new fit note is to give employers and your employees’ greater flexibility in managing sickness absence. A doctor will be able to suggest ways of helping an employee get back to work. This might mean discussing with an employee:

A phased return to work;

Altered hours;

Amended duties; and/or

Workplace adaptations.

The doctor will also provide written comments on the form offering a more detailed view of the kind of things that may help. For example, how employee’s condition will affect what they do and some of the things that could help employees return to work.

If you would like further information, please do not hesitate to contact us. We would suggest that the first time you receive a ‘Fit Note’ you call us and talk through the process.

August 2009: First specialist dementia advisors start work

People with dementia and their families will get more support throughout the course of the illness as the first dementia advisors start work. The advisors will act as a guide to help people with dementia and their families navigate the care and support system throughout their illness. They will help provide easy access to care, support and advice.

The sites piloting support networks will test different ways of providing local, practical and emotional support for people with dementia and their carers and give them an opportunity to take an active role in developing local services. Some of the services that will be piloted include dementia cafes – places where people with dementia and their carers can meet up - and a simple social networking site which will allow people with dementia to network with others.

Several of the demonstrator sites will also focus on working with ‘harder to reach’ minority groups such as people with learning difficulties, British Minority and Ethnic groups and people who do not speak English.

The demonstrator sites are as follows:

Dementia adviser: Bracknell Forest; Bradford; Bristol; Lancashire; Croydon; Medway; East Sussex; Enfield; Hampshire; Kingston upon Thames; Kirklees; Lincolnshire; Norfolk; Northamptonshire; North Tyneside; Oxfordshire; Redcar and Cleveland; Somerset; Suffolk; Warwickshire; Worcestershire and Wigan.

Peer support: Brighton and Hove; Cornwall; Cumbria; Derby; Hackney; Hertfordshire; Kent; Lambeth/Southwark; Leeds; Milton Keynes; Newham; Nottinghamshire; Salford; South End; Stockport; Surrey; Torbay; and Wakefield.

Information provided by Solicitors for the Elderly

August 2009: The Green Paper: Shaping the Future of Care Together

The Government wants to build the first National Care Service (NCS) (an equivalent to the NHS) in England. Although the Government claims to have set out a ‘vision’ for a new care service, much consolidates what already exist or should exists, with options for funding up for debate.

What would the NCS provide?

1. Prevention services

The right support to help individuals stay independent and well for as long as possible and to stop their care and support needs getting worse. This could be in the form of telecare or housing support payments. People who are leaving hospital and need care and support for the first time should have the right to the re-ablement help they will benefit from at home, for example for six weeks. This extra support will help people get back to their normal lives and should save money for the care and support system and the NHS. (This seems to build on intermediate care services, which is currently patchy around the country).

2. National assessment

Wherever the person lives in England, they will have the right to have their care and support needs assessed in the same way. (In theory, currently, if local authorities follow the Single Assessment Process, older people who are disabled or may be in need of community care services should receive the same mode of assessment.) The needs assessment would operate nationally, so there would be no need for a reassessment if the person moves area. There would be a right to have the same proportion of their care and support costs paid for wherever they live. The document suggests either a third or a quarter. This would be fair when considering regional variations, for example in London the cost of care is significantly higher than in other parts of the country.

3. A joined up service

Whatever the person’s care and support needs, services will work around them and will be better joined up. The document talks about achieving this by changing the mindset and behaviour of staff, within the heath, housing, social care system and disability benefits system. (There is already legislations which is meant to facilitate a joined up approach)

4. Information and advice

When a person needs care and support, or are preparing for it, they will find it easy to get information about who can help them, what care they can expect and how quickly they can get it. The document suggests utilizing third sector services, such as charities and voluntary organisations or expansion of comparison web sites. There would be established an independent organisation to give best value advice (it seems similar to the NICE organisation for health).

5. Personalised care and support

Care and support will be designed and delivered around the person’s needs, with much greater choice over how and where they receive support, and the possibility of controlling their own budget, wherever appropriate. (This is already part of the personalised agenda).

6. Fair funding

For those who are eligible, their basic care and support costs will be paid for, regardless of the individual’s resources. (There was no discussion as to eligibility). The care and support costs do not include accommodation because it is expected that people should pay for their own food and lodging, even if they were not in a care home.

The proportion (not the level) of funding would therefore be the same whether the person were in a care home or in their own home. The document sets out three approaches to fund the care and support component:

Partnership - In this system, everyone who qualified for care and support would be entitled to have a set proportion either a quarter or a third (whatever is finally decided). People who were less well-off would, like now have more care paid for, as they would qualify for financial assistance through benefits or if in a care home, their accommodation and board paid for. The cost would be raised through general taxation.

Instead of people receiving attendance allowance and similar benefits based on disability, it would go into one pot to fund the basic care and support. The report did not recognize that many people who claim attendance allowance actually get the money for supervision. The document is not consistent in how it defines ‘care and support’ (see page 7 and 29 as an example) but fails to explain what ‘basic care and support is’, which would be covered by the partnership option.

Insurance - Everyone would be entitled to have a share of their care and support costs met, just as in the Partnership model. But this system would go further to help people cover the additional costs of their care and support through insurance, if they wanted to. The state could play different roles to enable this. It could work more closely with the private insurance market, so that people could receive a certain level of income should they need care. Or the state could create its own insurance scheme. If people decided to pay into the scheme, they would get all their additional care and support free if they needed it.

People could pay in several different ways, before, after retirement, or after their death if they preferred, by way of a universal deferred payment. As an indication of the costs, people might need to pay around £20,000 to £25,000 to be protected under a scheme of this sort, compared with the average cost of care for a 65-yearold, which is £30,000. As it would be voluntary, the premium would be more expensive as less people would be prepared to buy into such a scheme.

Comprehensive - Everyone over retirement age who had the resources to do so would be required to pay into a state insurance scheme. Couples would have to pay a lower rate. Everyone with eligible needs would qualify for additional care and support for free when they needed it. It would be possible to vary how much people had to pay according to what they could afford. The size of people’s contribution could be set according to what savings or assets they had, so that the system was more affordable for people who were less well off.

Alternatively, if people wanted to be able to know exactly how much they would have to pay, most people other than those with lower levels of savings or assets could be required to pay a single, set figure, so that people knew how much they would have to save for.

The government’s rationale for making only the over 65s pay, is because they generally have the assets to pay and have benefited from free state university education and increase in property prices. Younger people with disabilities would not be in a position to pay, as they generally will not have the assets to pay into a scheme. The premium could be paid by installments or lump sum either during their lifetime or after death by way of a universal deferred payment. One can see that this policy may provide a further incentive for people to gift their home before they reach retirement in a bid to avoid paying the charge.

The document is not clear about the health and social care divide and whether the RNCC would be consolidated with other funding streams which are in respect of the cost of care as only attendance allowance was given as an example.

What is the benefit from the partnership option?

The average weekly cost in the UK of a nursing home bed is £664 and residential care bed is £464. RNCC from Primary Care Trusts for nursing care is currently £106.30 Attendance allowance at higher rate is £70.35

Self-funders in nursing home therefore have £176.65 paid towards their care fees, which is 26.6% of the cost (i.e. just over one quarter). It is unclear of the nursing care contribution would still be paid, in which case people would be better off. For self funders in a residential home they would be better off as they currently receive only 15.16% of their care costs funded via attendance allowance.

To read the green paper click:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance

July 2009: New hotline for carers launched

A one-stop information and advice service for the army of carers who look after ill, frail or disabled friends and relatives has been officially launched by the Department of Health

The Carers Direct line includes:

Details of support available, including assessments, benefits, direct payments, individual budgets and time off
Help to maintain, leave or return to employment
Help in education or training
Advice on how carers maintain or improve their social and emotional well-being and their physical and mental health
Access to health and social care for the person being cared for
How to access information about, and support from, health and social care services for the person being cared for

Helpline 0808 808 7777