Social work and end-of-life care

Social work is important in end-of-life care

Archive for the ‘financial’ Category

Public policy neglects funeral costs for people living in poverty – international study

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This interesting article argues that public policy neglects funeral costs as an issue for people living in poverty; it reports a pilot international study.

From the Cradle to the Grave: Funeral Welfare from an International Perspective Valentine 2013 Social Policy & Administration Wiley Online Library.


Written by Malcolm Payne

20 September 2014 at 3:11 pm

Mesothelioma changes may be for insurers’ benefit, not victims; more research needed

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Palliative care social workers often have to help people with mesothelioma, the lung disease which usually leads to an unpleasant death, caused by exposure, sometimes unwitting and often decades before the occurrence of the disease, to asbestos. This is an industrial disease and employers must pay compensation, but it is hard to prove where people were exposed to asbestos, and many employers have disappeared in the interim. Provision is often made by insurers, and the compensation payments have been valued by people affected, and their families after their deaths. The insurance industry has been trying to limit its liabilities (which are extensive and ongoing) and the government has been negotiating with them over this. This brief comment from the Kennedy’s Liability Briefs (Kennedy’s are a law firm that specialise in various forms of legal liability) indicates a recent move, and gives you a clue to what’s involved:

The Mesothelioma Act came into force on 1 September 2014, which creates a payment scheme, funded by the insurance industry, in order to help those victims who currently have no redress to compensation. Meanwhile, the Justice Committee has criticised the Government for lack of transparency about the ‘agreement’ drawn up between the Association of British Insurers (ABI) and the Government in 2012 in which the ABI agreed to pay for the payment scheme. A response by the Government to the call for a fresh review is expected by the end of September.

Link to the Kennedy’s Liability Brief

You might find it useful to look at the legislation:

Link to the Legislation

and look at the Parliamentary debates.

Link to the Parliamentary debates

This was routine government business, so it started out in the House of Lords. You can see the explanation of the Act given by Lord Freud in the House of Lords at the second reading, and this gives you a good idea of what’s involved:

Link to the second reading House of Lords debate

However, the Brief suggests that not all is hunky-dory. The Justice Parliamentary Select Committee published a series of reports about whether people claiming compensation could reclaim legal costs; the government, in its aim to cut legal aid costs has been arguing not, but virtually everyone else argues for it. The government is accused of not being totally transparent in its dealings with the insurance industry, giving rise to the suspicion that it has been keener to help the insurers than the victims of the disease (while also keeping its costs down). the report says, at Para 29:

We are concerned that the Government has not been transparent or open, either with us or with other interested parties, about the fact that its overall policy in relation to mesothelioma has been shaped in accordance with an “agreement”, however informal and elastic, which it had reached with employers’ liability insurers. It is hard to see how a balanced and informed public debate can take place when a prior agreement has been reached between two of the principal parties to that debate, and that agreement is not known to others participating in the debate, including victims.

Link to the Justice Committee 3rd Report on the scheme

Bearing this in mind, it might be good to keep our eyes open for how the Act in practice will work on behalf of victims and families, and encourage some of the interested MPsto tkae up things which do not seem to be going well.

There are lots of other issues, which emerged as the Act progressed through Parliament. For example, MPs were concerned that not enough research was being done to ensure that British NHS patients got the best treatments available elsewhere. You can see this debate in the House of Commons Report stage:

Link to the Third Reading debate.

Written by Malcolm Payne

2 September 2014 at 10:54 am

Tips for voluntary organisations dealing with NHS and social care commissioners

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A legal advice newsletter points out that with voluntary organisations increasingly being commissioned to provide NHS and social care services, they are also increasingly being asked for loads of information, but also need to be supported in doing so. You have to ask, as ministers in Parliament do when asked questions by MPs, whether the cost of collecting the data is justified. If it’s a real drag on service provision, and/or the commissioner won’t pay adequate admin costs, the voluntary organisation should seriously consider saying ‘no’ or ‘pay us for it’. Here are the points the newletter suggests a volorg should consider:

  • The time involved in giving this support. Smaller organisations in particular need to ensure costs are covered.
  • Organisations need to ensure any information they provide is not used out of context or in any way that could damage their reputation.
  • Confidentiality – if the information is not in the public domain, does your organisation have the right to pass it on?
  • Data protection – take care in passing personal data to commissioners as you will need to meet your data protection obligations.

I’ve often thought that voluntary organisations are naive about whether the local NHS or social care administration is on their side: my answer is that of course friendly relationships are necessary, but they also need to accept that volorgs take a business-like approach to  the relationships. Commissioners often think that because they’re paying the volorg staff are inferior in some way and should be expected to jump around doing whatever they decide. Good relationships work from both ends of commissioning; the volorg is not a supplicant, but an equal professional partner in providing a service. The article sees supporting the commissioning relationship as an important role for the commissioner.

Link to the original article on commissioning support


Written by Malcolm Payne

6 January 2014 at 12:13 pm

Solicitors are not good at telling if people have the mental capacity to make a Will

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130311 solicitorsAn interesting article reports research into solicitors dealing with older people who may not have mental capacity – if their interviewing skills are poor, they’re likely not to recognise that their client may not have the capacity to make a Will.

Anyone who has worked in end-of-life care will have had the experience of a patient wanting to write or change their Will – in a hurry because they have suddenly become aware that they are going to die soon. Often this is because a social worker has suggested to them that they need to do this. And because professionals and their agencies working in palliative care are cautious about getting involved (so as not to be accused of seeking a legacy for themselves or their hospice), the solicitor is often left to do this on their own. If their interviewing skills are naff, they’re likely to miss mental incapacity.

My experience was that, when a Will was disputed afterwards, and the solicitor’s judgement questioned (they are legally responsible for ensuring that their client has the capacity to make a Will – this is called ‘testamentary capacity’) they often seem to have given little thought to whether their client had capacity and this research explains why. Mental and testamentary capacity is not always connected with the ‘social graces’ and many older people can keep up the veneer of coping, when they don’t have the judgement to make complicated decisions.

It seem that social workers referring a patient to a solicitor ought to take responsibility for flagging up if there are doubts about capacity.

Link to Testamentary capacity and solicitor negligence – Lexology.

Written by Malcolm Payne

11 March 2013 at 12:01 pm

Coping financially at end of life: US and UK info

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121222 Finanical planning in eolAfter the shooting at a school in Connecticut, here’s another comment on the attitudes to guns and money in the US, together with a comment on the high cost of end-of-life care. In a series of articles from CNN Money on managing the costs at end of life (which commendably focuses on talking and planning in advance), one comment is a joke: ‘My grandad was 96 failing health he asked me if he should buy a gun and wander off to the forest, to end things. I said absolutely not that would be ridiculous, you should just rent the gun’.

To see the three articles (these are American, but it’s interesting to see how it pans out in the US; British information below):

Link to the article on funeral costs.

Link to the article on advance care planning.

Link to the article on planning for survivors.

The focus of these articles is on each of the three phases of financial issues that arise in end-of-life care: planning for the costs of the illness, the funeral and financial reconstruction after the death.

These came out in research colleagues and I did evaluating a project for St Christopher’s Hospice, which was published at the time:

Bechelet, L., Heal, R., Leam, C. and Payne, M. (2008) Empowering carers to reconstruct their finances. Practice 20(4): 223-34.

Link to the journal website. But you have to pay – we don’t get anything from your payment – it’s all an outrageous level of profit for the publisher.

Margaret Reith and I also generalised this when we wrote our book:

Reith, M. and Payne, M. (2009) Social Work in End-of-Life and Palliative Care. Chicago: Lyceum; Bristol: Policy Press.

Link to the American publisher’s website: Lyceum Books.

Link to the British publisher’s website: Policy Press.

Here’s the table we created:

Table 5.4 Financial issues at different stages in the illness for caregivers

Stage What happens financially
1   Disease progression  creates financial stress for patient and family Employed patients and caregivers may lose some or all of income; long-term disability may lead to changes in social security, pensions, insurance or other benefits.Retirement pensions or other insurance or social security rights may be triggered.Additional costs of condition, treatments, travel to hospital.
2   Death Additional costs for funeral. Death or bereavement insurance or benefits compensate.Caregivers no longer receive financial support for their role.Caregivers may become entitled to widows’ dependents or other insurance or social security benefits
3   Post-death Long-term costs of illness or funeral.Long-term financial reconstruction for family.

Source: Developed from Bechelet et al (2008)

Written by Malcolm Payne

7 January 2013 at 11:06 am