GPs charging for medical reports needed for benefit appeals

News broke this week that many GPs are either refusing to provide medical evidence letters for appeals against Work Capability Assessment (WCA) decisions or charging people up to £130 for them. This comes not long after the government admitted that these assessments had major failings.

Earlier this year it was reported that GPs in Wales were told that people requesting letters of medical evidence for WCA appeals were an "abuse of NHS resources".  Now there is evidence that some GPs who will provide such letters are charging for them. With the Citizen's Advice Bureau reporting 54 per cent more people seeking support from them regarding Employment Support Allowance (ESA), this is very worrying. All the more so when you consider that disabled people are twice as likely to be living in poverty as non disabled people, thus making them less likely to be able to afford to pay for the letters.

GP's have argued that they simply don't have the time to deal with requests for appeal letters. They experienced a 21% increase in requests between January and July alone this year. Last week a "just say no" campaign to support GPs refusing to provide such letters was launched. All of this is worrying not only in terms of making appealing WCA decisions harder, but  also in the potential it has to create tension and hostility between disabled people and their GP. This is of particular concern given disabled people are more likely to need to visit their GP on a regular basis.  

The DWP guidelines state:

“Claimants should contact Jobcentre Plus or the Appeals Service, where appropriate, if they think that further medical evidence is necessary to support their claim or appeal. They should state clearly their reasons for believing that further evidence is necessary.

If Jobcentre Plus or the Appeals Service consider that further medical evidence is necessary, they will seek it. They will be responsible for paying any fee to the doctor providing the report.”

Going by what DWP have said, people should not need to pay at all. Instead they should provide reasoning when appealing on why they believe further medical reports is needed. If these reasons are agreed, then the Appeals Service should pay. However, a parliamentary briefing note reveals that of requests from the DWP for additional information from GPs, only 50% are replied to.

It is also unclear whether people appealing a WCA decision are made aware of the willingness of Jobcentre Plus and the Appeals Service to request and pay for additional evidence from their doctors, or what the process is if their case for obtaining this information fails.

So we have a failing assessment process, with decisions repeatedly being overturned on appeal, and the access to medical evidence which may help with any appeal in some cases being costly or outright denied. Aspire believe this makes the urgency for the Work Capability Assessment to be reviewed and changed all the more important. 

Legal challenge against Council's care capping policy fails

A legal challenge against Worcestershire County Council implementing a 'maximum expenditure policy' on social care has failed

In November 2012, Worcestershire County Council announced it would be implementing a policy which placed a maximum cost on the amount they would pay towards an individual’s social care requirements. This maximum was set at the cost to deliver care in a residential care home.

In responding to the consultation that Worcestershire carried out regarding the introduction of this policy, Aspire pointed out that “care in your own home and care in an institution is not comparable. If you are not comparing like for like, how can you possibly compare the cost of the two systems?”

Aspire, local disabled people, and many others, are fearful that if it is more expensive to receive the support at home than in a residential setting, people could be forced into residential care. A Worcestershire resident known as D - a 17 year old who has a moderate learning disability and epilepsy, and who will soon be accessing adult social care services - applied for a Judicial Review of the Council's policy. The case against the Council was that in announcing such a policy they had failed to review what its consequences could be and had failed to comply with its public sector equality duty under section 149 of the Equality Act 2010. Despite ruling in favour of the Council, the judge did warn that:

“...in exercising its discretion as to whether to allow greater costs than the residential equivalent, the Council will be required to take into account its own policy objectives of giving disabled individuals control and choice over their care support, encouraging disabled individuals to live independently in the community, and having less not more individuals in residential care."

“It will also be required to take into account its assurances during the consultation period – and in the course of this claim – that no individual will be forced into living in residential care, as a result of this policy alone.”

So although there still remains fears about the consequences of this policy, it is definitely welcome to have a high court judge state that such a policy must not result in anyone being forced into residential care. This will help provide weight to any future legal challenges if anyone is forced into residential care as a result of this or similar policies.

The worries stretch beyond Worcestershire. There are concerns regarding cuts to social care and the consequences regarding independent living across the UK. In 2011 an inquiry by the Joint Committee on Human Rights into Article 13 of the UN Convention on the Rights of Disabled People received "considerable evidence that disabled people’s right to independent living was beginning to be severely thwarted by the funding situation in this country". The impending closure of the Independent Living Fund (ILF) – another vital source of funding for social care which allows people to live independent lives - is feared to only add to this situation.

Aspire commissioned research which clearly shows the detrimental impact on people with SCI of living in institutionalised settings. Summed up by a research participant called Harry, living in a non-independent setting “wrecks who you are, totally wrecks you, strips you down to the bone, destroys you, takes away your spirit, your independence, breaks you, just breaks you. It took away who I am. I’m just another chicken on the production line. Pluck you, and then wrap you up, and model you into what they want you to be – not who you are. It just breaks you”.

It takes away an individual’s choice and control over their life, creating a prison like environment, and also prevents them from having a family or social life or being in employment. Because of this, we share the concerns of other disability groups that a policy such as that of Worcestershire County Council could result in people being forced to live in residential care.

We believe that disabled people’s right to have the same choices and opportunities as non-disabled people is of paramount importance. We will be watching the implementation of the policy and hope that Worcestershire and other local authorities take seriously the judge's warning that Worcestershire should act on its assurances "that no individual will be forced into living in residential care, as a result of this policy alone". 

Can’t walk: not active? Wheelchair users continue to be missed out in mainstream sport surveys.

The newspapers this week reported on the state of the Nation’s exercise levels. Even when you are used to seeing regular articles on rising obesity levels and falling health indicators, it was still pretty shocking; 20 per cent of us, it seems, have not done any exercise in the last four weeks and 80 per cent do not manage to meet the government’s recommended activity targets.

This latest depressing read comes from research undertaken by the Centre for Market and Public Organisation at Bristol University using Sport England’s Active People Surveys.

Sport England’s own analysis of their data focuses on participation in sport and active recreational activities. We know that disabled people fare badly here; just 18% of disabled people play sport once a week, against 35% when the whole adult population is considered.

Through mystery visits at gyms, we’ve found that equipment can be inaccessible. Although staff were accommodating and friendly, fitness activity that staff at a gym facility suggested to the wheelchair user was poor. This suggests that as well as better equipment, better training and awareness is needed among staff about wheelchair users. Aspire’s own research in this area has shown that there is discrimination within the leisure industry, and a lot of the work out of the Aspire National Training Centre is aiming to improve things; clearly, there is still a long way to go.

What makes this new study so interesting is that they use data that Sport England collect but do not themselves break down. Importantly, this means that we can see how active a lifestyle people lead, even when they do not participate in organised sports; the study is just as interested in how often people walk or cycle for non-leisure purposes as it is in how often they go to the gym or throw a ball around a court.

This shows, amongst other things, that there is a positive correlation between household income and activity levels; given that disabled adults are twice as likely to live in low income households as non-disabled people, it seems it’s not just discrimination and access that needs to be tackled if we’re to see more disabled people being active. These are barriers that disabled people face in participating in sport.

But, of course, there’s a flaw here in that if you can’t walk, the research assumes that you can only be active by taking part in a “para-sport”. What we’re missing is information on how active manual wheelchair users are in their day to day lives. Some aspect of the ‘Paralympic Legacy’ should have taught society that the ability to walk is not the be all and end all of getting around, but there’s more to it than that. As we’ve seen, disabled people face more challenges than most in accessing formal activities, so having the lifestyle data for wheelchair users is particularly important.

Aspire finds the ‘Doing Sport Differently’ report by Disability Rights UK a useful guide for disabled people in finding ways in which they can be more active in sport and exercise.

Wheelchair users face all the health disadvantages that come with being inactive, as well as additional difficulties that come with transferring and self-propelling the more unfit and heavier they are. The NHS doesn’t always help, often providing wheelchairs that are so unsuitable they limit the users’ ability to get out and about. Knowing to what extent there’s a problem with inactivity, and using the data to be able to follow the impact of changes or campaigns put in place, would make a massive difference.

We’ll be writing to Sport England to suggest some changes to their questionnaire so that wheelchair users are not omitted from the lifestyle section of their questionnaire. And in the meantime, we’d suggest everyone gets out for a quick walk or push round their local park this week.

The failings of the Work Capability Assessment; who is to blame?

The last two weeks have not seen the best headlines for Atos healthcare, the company that has had the monopoly on delivering the controversial Work Capability Assessments (WCA) since Employment Support Allowance (ESA) came into existence in 2008. First came the news that, following a Department for Work and Pensions (DWP) audit of 400 Atos reports, it was found that 41 per cent of them  were flawed and unacceptable. This was followed by the announcement that from 2014 the DWP would begin inviting bids from other companies to deliver the WCA. Meanwhile, the government has started its fourth independent review into the WCA.

However, would all problems surrounding the WCA be solved if the assessment was delivered in an 'acceptable' manner? Or does the focus on Atos run the risk of ignoring the fundamental problems with the WCA? Given the high success rate of appeals against Atos decisions, and a recent account by an ex-Atos doctor, it would suggest that Atos is the problem. However, organisations, charities, individuals and even parliamentary committees have argued that the real problem lies with the assessment itself, written by the DWP not Atos.

One of the key problems with the assessment’s premise is the focus on the individual’s ability to carry out tasks. At the moment, they measure someone’s ability to complete a particular task in isolation, and they fail to consider the social and environmental barriers to work that people face. For example, the ability to use a keyboard doesn’t mean that you won’t face the barrier of negative attitudes held by employers when trying to find a job. You may be capable of working but unable to do so because of discrimination by employers.

The assessment does include questions about bowel and bladder management, but to receive 15 points (the amount required to qualify for ESA) you must experience at least once a month a loss of bowel or bladder control/substantial leaking from a collecting device. This fails to take into account that many work places will not have accessible bathroom facilities and/or how much distress experiencing such an accident can cause. In addition, this question does not consider that, if you rely on District Nurses for bowel care, it’s unlikely that they will come at a consistent and reliable time which enables you to get to work on time. Disabled people assessed as able to find work should be able to access support to help address the practical barriers they face. However, the majority of support provided comes in the form of attending work focused interviews with people who may not have any knowledge of a disabled person’s impairment. There are also increasing sanctions and mandatory activities being placed on unemployed disabled people assessed as fit for work.

People with Spinal Cord Injury can be subject to the stereotype of being fit and healthy wheelchair users - they may be, they may not be - what is clear is that the Work Capability Assessment (WCA) is not adequate in assessing people’s varying experiences The fact that it has been shown time and time again that there are great failings with the WCA, and yet the government are repeatedly failing to fully address concerns, suggests that not enough priority is being placed on correcting failures. Whether finding alternative providers to Atos will make a difference to the effectiveness of the WCA remains to be seen. Without urgent change on the actual assessment however, the system will continue to fail in meeting the needs of disabled people.  

Nursing care in hospitals

There was a lot of publicity recently around the Keogh Review, which looked into the quality of care and treatment provided by 14 hospital trusts in England with persistently high mortality rates in the last two years. Unusually large death rates do not necessarily mean that the hospitals are poor as there are other factors such as the health profile of a local area that have an impact. Instead, reasons for deaths need to be looked at in detail and the statistics in this act as an alarm sounding that the situation needs to be investigated.

The news headlines were dominated by political punch throwing (not literally!). None of these looked at hospitals that have specialist Spinal Cord Injury Centres, but we looked a bit deeper into the report and were interested in one particular indicator that was analysed in the hospitals; pressure ulcers, more commonly known also as pressure sores.

If you don’t know what one looks like, image search the term pressure ulcer (WARNING! Not for the queasy and faint hearted).

Anyone, including those with full mobility, can get a pressure sore if they stay in one position long enough to place forceful pressure on a particular part of the body. Wheelchair users or those who stay in bed are especially susceptible because they may have difficulty repositioning themselves. It is important that when people are on hospital beds, that nurses are available to move patients regularly. When limited mobility is coupled with impaired sensation, a person is more likely to develop a pressure sore due to the inability to sense when to make a weight shift in order to relieve pressure. People with Spinal Cord Injury have a greater risk of developing one.

It was found that half of the hospital trusts had performance levels outside of the expected range for pressure ulcer care. Another report following a survey from the Florence Nightingale School of Nursing and Midwifery in London found that nurses at NHS hospitals were being overstretched and that they were actually rationing the care that they were providing to patients due to time pressures.  The Keogh report was particularly scathing on the standards of nursing care and staffing levels at these hospitals.

We’ve heard some real horror stories from people with spinal cord injuries who have been to general hospitals. People tell us all the time that the nurses don’t understand how important it is to make sure that spinal cord injured patients change their position regularly. Aspire advises that when people to go to non-specialist Spinal Cord Injury Centres for treatment, that they contact their centre and also ask the hospital they are going to contact their Spinal Cord Injury Centre too. It is important that hospitals receive the specialist guidance they need to ensure that not only pressure sores are prevented, but also bowel and bladder complications do not arise.

Keogh recommended that more work was needed to reduce incidents of pressure ulcers and that there was “poor quality root cause analysis of incidents and limited dissemination of learning from when things go wrong.”

We find this concerning. We would like things not to go wrong in the first place, but when it does, the least we can expect is for it to be investigated so that lessons can be learned from it. The fact that it wasn’t shows people were being failed and arrangements for patient care were not scrutinised.

They can lead to people spending months on bed rest. What’s more, they are preventable and if developed, can also be managed so that they don’t become more severe.

We have spoken with many people who have experienced pressure ulcers at general hospitals. It is not unusual for people to arrive at spinal cord injury centres with pressure ulcers. In terms of patient rehabilitation, this causes further delay and slows down progress.

Having the right mattress and making sure that patients are regularly turned are just two ways in which these pressure ulcers can be prevented.

In our experience, we believe that there needs to be more awareness among staff at general hospitals about pressure ulcers. There needs to be an urgent review into the levels of staffing on wards. Pressure ulcers are easily preventable, but it does require a certain number of staff to be able to ensure this is possible. Cuts in staffing levels not only increase the likelihood of people experiencing pressure ulcers, but the additional time and care required to then manage and heal them will cost the NHS more in the long term. Investing time and money in prevention is in the interest of both patients and the NHS.

- Aspire Campaigns and Research Team