Category Archives: Access to treatment

Barriers which prevent people accessing health care, including charges and co-payments

This article was first published by Simon Collins at HIV i-Base on 2 September 2019.

On 2 September 2019, leading HIV charities including HIV i-Base and the UK-Community Advisory Board (UK-CAB), published an open letter to Rt Hon Amber Rudd MP in her capacity as Minister for Women and Equalities, calling for an urgent intervention to include sexual health in the upcoming Government Spending Round. [1]

In England, the responsibility for sexual health was disastrously shifted from the NHS to local authorities, whose public health budgets have been cut in real terms by £700 million over the last five years.

These cuts have directly reduced access to sexual health services, where many people are unable to routinely access treatment and testing due to limitations in allocation of daily appointments.

Many of these cuts disproportionately affect lesbian, gay, bisexual and transgender (LGBT+) and black and minority ethnic (BAME) communities, and young people.

A similar joint letter calling for increased funding for sexual health was also sent today by LGBT+ groups from the Labour, LibDeb and Conservative parties.

Last year, a review of services in South London reported that 1 in 8 people with symptoms were being turned away from sexual health clinics. This included 40% who were under 25 years old and 6% who were under 18.

References

  1. Green I et al. Urgent request to intervene: Funding for sexual health services. 2 September 2019.
    http://www.tht.org.uk
  2. Collins S. Almost 1 in 8 people with symptoms turned away from sexual health clinics in SE London: 40% are under 25 and 6% under 18 years old. HTB 01 May 2018.
    http://i-base.info/htb/33968

Please see this Press Release from BASHH (British Association of Sexual Health and HIV) and BHIVA (British HIV Association) from October 2018: Government funding cuts leave sexual health and HIV care at ‘breaking point’

Leave a comment

Today the Mail on Sunday published an article headlined ‘HIV treatment now costs NHS as much as breast cancer – Fears £606m annual bill for sexually transmitted disease is fuelled by flood of foreign health tourists‘.

The only views to ‘balance’ the diatribe published in the paper and online was a short rebuttal from BHIVA  (British HIV Association) and NAT (National AIDS Trust) as well as a short statement from NHS England on how costs for HIV treatment are actually reducing:

A spokesman for the BHIVA said: ‘In the UK, new diagnoses of HIV are now falling because of the success of testing and treatment.’

An NHS England spokesman said the cost of HIV treatment had fallen £28 million from £634 million in 2017/18 to £606 million in 2018/19.

A Department of Health spokesman said: ‘We’ve seen a decline of almost a third in new HIV diagnoses in the UK in recent years.

‘As with all other serious infectious diseases, we do not charge overseas visitors for treatment for HIV as, if left untreated, there is a significant risk to others in this country.’

Deborah Gold, chief executive of the NAT, said: ‘The concept of health tourism for HIV treatment is an outdated myth.

‘It is actually a problem that we have such long average delays, usually years, between migrants’ arrival in the UK and them accessing HIV testing and care.

‘Universal availability of HIV treatment is a cornerstone of the response in the UK. Any suggestion this is a poor use of NHS money, or that access to treatment should be limited for anyone, is outrageous. In fact, it is evidence of the NHS at its best: saving lives and preventing ill-health.’

UK-CAB (the UK Community Advisory Board) responded to the article via this tweet with the following statement:

“The UK is a world leader in reducing the numbers of new HIV diagnoses and one of only six countries to have already met the UNAIDS 90-90-90 targets. This achievement would not have been possible without upscaling HIV testing and providing immediate antiretroviral treatment to all people living with HIV in the UK.

People with HIV on effective antiretroviral treatment cannot pass the virus on to their sexual partners or to their unborn child during birth and pregnancy. The investment in free HIV treatment for everyone with HIV is fundamental to meeting the Government’s commitment to end new transmissions by 2030.

Stigmatising information like that reported in today’s Mail on Sunday only serves to hinder the UK’s response to the HIV epidemic. Whilst we have made huge strides in reducing new diagnoses by an incredible 28% between 2015 and 2017, the numbers of people diagnosed late is still too high.

Late diagnosis not only increases the chances of premature death but also heightens the risk of HIV being unknowingly transmitted to sexual partners. We cannot tolerate attitudes which put people off testing and finding out their HIV status.

People living with HIV should not be pitted against other patient groups or conditions.

Access to treatment and care for all people living with HIV ensures that individuals can live well and in good health and also stops transmission of the virus to others. Any insinuation that denying HIV treatment to those without ‘settled’ status would be a benefit to the nation’s public health or NHS budgets is nonsense.”

Please circulate this as widely as possible.

1 Comment

Patients still make enquiries at busiest hours, despite 24/7 online access

· University of Warwick publishes first independent evaluation of one of the main providers of online consultation platforms

· Targeting services at younger patients and those with general administrative enquiries could be most effective

· “In reality, patients were seeking access to health care at the same times and for the same sort of problems than they did using traditional routes.” Says supervising author.

Patients are using online consultations in the same way they would arrange a consultation via traditional means, a new independent evaluation by the University of Warwick reveals.

Despite this, the study identifies several opportunities to tailor online platforms to specific patient requirements and improve their experience.

Primary care researchers from Warwick Medical School have today (26 March) published the first independent evaluation of one of the main providers of online consultation platforms in NHS general practice. Published in the British Journal of General Practice, it provides independently analysed information on the types of patients that are using online triage systems, how and when patients are using this platform, and what they think of it.

Online triage is a system in which patients describe their problems via an online form and subsequently are telephoned by a GP to conduct a telephone consultation or arrange a face-to-face consultation. Practices aim to respond within one hour of receiving the request.

The researchers examined routine information from 5140 patients at nine general practices using the askmyGP platform over a 10 week period. Highest levels of use were between 8 am and 10 am on weekdays (at their highest on Mondays and Tuesdays) and 8 pm and 10 pm at weekends, mirroring the busiest time for patients contacting their practice via telephone.

Supervising author Dr Helen Atherton, from Warwick Medical School, said: “With online platforms there is an assumption that having a 24/7 ability to make contact with a general practice will cater to those who wish to deal with their health problem at a convenient time, often when the practice is shut, and that being online means they will perhaps share different problems than they would over the telephone or face-to-face.

“In reality, patients were seeking access to health care at the same times and for the same sort of problems than they did using traditional routes. This suggests that patients’ consulting behaviour will not be easily changed by introducing online platforms. Therefore practices should be clear as to exactly why they are introducing these online platforms, and what they want to achieve for themselves and their patients in doing so – the expectation may well not meet reality.”

The NHS Long term plan sets out that over the next five years all patients will have the right to online ‘digital’ GP consultations. The main way these are being delivered is via online consultation platforms. The online platforms claim to offer patients greater convenience and better access and to save time and workload for GPs, however there is currently a lack of independent evidence about their impact on patient care and care delivery.

Patient feedback analysed as part of the study showed that many found the askmyGP system convenient and said that it gave them the opportunity to describe their symptoms fully, whilst others were less satisfied, with their views often depending on how easily they can normally get access to their practice, and on the specific problem they are reporting.

The study found that two thirds of users were female and almost a quarter were aged between 25 and 34, corroborating existing evidence. The commonest reason for using the service was to enquire about medication, followed by administrative requests and reporting specific symptoms, with skin conditions, ear nose and throat queries and musculoskeletal problems leading the list.

The researchers argue that practices should avoid a ‘one size fits all’ approach to implementing online consultations and should tailor them to suit their practice populations and model of access, considering whether it is likely to add value for their patient population.

Dr Atherton adds: “Individual online consultation platforms are uniform in their approach, patients are not. We found that patient satisfaction is context specific – online consultation is not going to be suitable for all patients and with all conditions and that one approach is unlikely to work for everyone.

“Practices could focus on encouraging people to deal with administrative issues using the platform to free up phone lines for other patients. It could be promoted specifically to younger patients, or those who prefer to write about their problems and not to use the telephone. Clear information for patients and a better understanding of their needs is required to capture the potential benefits of this technology.”

· ‘Patient use of an online triage platform; a mixed-methods retrospective exploration in UK primary care’ published in the British Journal of General Practice, DOI: 10.3399/bjgp19X702197

1 Comment

The Pharmaceutical Journal reports that the Good Law Project threaten DHSC with legal challenge over “failure to consult properly”

From The Pharmaceutical Journal 21 FEB 2019 By Carolyn Wickware:

The Good Law Project has warned the Department of Health and Social Care that it will start judicial review proceedings if serious shortage protocol powers are not revoked on the grounds that the consultation was “insufficient and unlawful”.

A non-profit group has threatened the government with legal action unless it revokes new powers designed to allow pharmacists to switch patients’ medicines if there is a shortage.

The Good Law Project has said it will start judicial review proceedings over newly implemented “serious shortage protocol” powers if the Department of Health and Social Care (DHSC) fails to remove the amendments in legislation by 25 February 2019.

Amendments to the Human Medicines Regulation 2012, which came into force on 9 February 2019, mean the government can now issue protocols asking pharmacists to respond to a medicines shortage in one of four ways: to dispense a reduced quantity, a therapeutic equivalent, a generic equivalent or an alternative dosage form of the drug.

Under the protocol, the pharmacist would not have to consult the patient’s GP before making the switch.

The Good Law Project is now seeking to launch a judicial review of the amendments, partially on the grounds that the government’s initial consultation – which lasted one week on 5–12 December 2018 – was “insufficient and unlawful”.

In a legal document sent on 19 February 2019 from the group’s lawyers to the DHSC to inform them of their intent to start the review proceedings, the Good Law Project said it was “unclear exactly who the Secretary of State consulted with and how/on what basis”.

It added: “The failure to consult properly with organisations representing specific patient interests was unlawful.”

Ekklesia reports:

Jolyon Maugham QC, Director of the Good Law Project, said: “Both doctors and patients have proper concerns about their safety in the event of medicine shortages. We want the Government to withdraw the prospect of SSPs [Serious Shortage Protocols] until it has complied with its legal duties and consulted properly on their use. If the Government does not take this step, the Good Law Project will launch judicial review proceedings in the High Court.”

Professor Tamara Hervey, Specialist Adviser to Parliament’s Health and Social Care Committee, said: “In the event of a no-deal Brexit, there would be likely to be shortages of medicines. The absence of a legal framework for imports and exports drastically affects supply chains. Stockpiling plans cannot cope for more than a few weeks. This is a serious issue for people needing a regular supply of a particular type, strength and quality of medicine.”

Jane Hanna, Chief Executive of SUDEP Action, who is supporting the judicial review said “Patients, doctors and pharmacists are used to prescriptions and the processes surrounding them. For people with long-term conditions, like epilepsy, what is on the prescription may represent months and years of trying out the best medication schedule. Changes made to this delicate balance can for some, undo this in an instant. For epilepsy this could lead to less seizure control, impacting on quality of life (ie: losing a driving licence, affecting home and work) and significantly for some this can prove fatal.  At present if a supply of medication is made in error, lessons can be learnt because of the clarity of who signed and who supplied the prescription.

Deborah Gold, Chief Executive of NAT (National AIDS Trust) said: “We are deeply concerned that these changes were made without proper consultation. Prescribing HIV medication is a complex process which must take account of a multitude of factors. The only person qualified to safely alter the medication prescribed to a person living with HIV is that person’s HIV consultant.”

• The Pre Action Protocol Letter can be seen here

 

Leave a comment

Chipping Barnet CLP notes that access to contraception is a fundamental human right underpinning equality, impacting on the health, structure and prosperity of both society and families. The 2012 Health and Social Care Act disadvantaged women, separating much of the funding for contraceptive care from the NHS by moving the responsibility for commissioning into Local Authorities, with NHS providers competing for contracts. As a result, the commissioning of contraception is now separate from the commissioning of other aspects of women’s health, including abortion. From both a woman’s and a clinical perspective, this is illogical. Compounding this, the impact of austerity on Local Authorities has led to a reduction in services, reduced access and to a postcode lottery for contraception in England.

Chipping Barnet CLP believes that contraceptive services need to be fully funded and accessible in all areas of the UK, with co-operation replacing competition. It welcomes the commitment of the Shadow Health Department to abolish competitive tendering for these essential services, and to work with clinicians to establish centres of excellence alongside regular accessible clinics to which women have free and easy access to confidential care.

Chipping Barnet CLP calls on the Labour Party to resolve to deliver fully funded contraceptive services in all areas of the UK, setting up a working group whilst still in opposition, composed of experienced clinicians and commissioners, to write a blueprint for delivery which will be implemented within the first year of the Labour Government.

Published by Jean Hardiman Smith with the permission of Sarah Pillai ( Chipping Barnet CLP )

Leave a comment

Nick Bostock reports at GPonline that:

Under-pressure GPs are delivering ‘remarkable outcomes’ on cancer

You can read the complete article here. Nick reports:

GPs ‘can take a lot of credit’ for marked improvements in early cancer diagnosis and reductions in the proportion of cases detected as an emergency, according to a cancer expert.

In the year to March 2018, the proportion of cancer patients who first presented at hospital as an emergency fell to 18.8% – down from 21% in the year to December 2012.

Over roughly the same period, cancers detected at an early stage increased significantly – rising from 46% in 2013 to 52% by mid-2017, according to figures from the National Cancer Intelligence Network (NCIN).

However: GPonline reported earlier this year on research showing that GPs were as good as consultants at making appropriate use of cancer diagnostic tests – and yet pledges to give GPs direct access to four key diagnostic tests – blood tests, chest X-ray, ultrasound and endoscopy – have not been delivered in many areas.

Isn’t it about time that GPs were also given access to the new technology for GP consultations via mobile and Skype? This is currently being ‘rolled out’ by GP at Hand. Here’s a transcript of the R4 Today programme 13 September at 6 mins to 9:00 am (I made this transcript and I believe it’s a fairly accurate job – but any mistakes are mine):

(Int) Interviewer

AP (Ali Parsa, CEO Babylon – parent company that runs GP at Hand)

RV (Dr Richard Vautrey, Chair GP Committee, British Medical Association)

SoS = Secretary of State

 

(Int): So Ali Parsa just explain to us how your App works.

(AP): So, we have a very simple service. So, what it does is allow patients to check their symptoms whenever they want. To make an appointment with a doctor within seconds, to be able to see a doctor within minutes. In fact, I was just checking my App and it says that if I want to see a doctor I can see one at 9 o’clock today, in the next few minutes.

(Int): You mean ‘see’ over the phone?

(AP): Over the phone. And if you want to see somebody physically then, you can go see them that very same day. It is open 24hrs a day, 365 days of the year. And it is available for the same price the National Health Service pays any other GP. What we have done is to solve the problem of accessibility and the continuity of healthcare – using technology and what the SoS and the NHS is doing today is celebrating that and promising it for the whole country.

(Int): And Richard Vautrey, this is something which patients complain about again and again, isn’t it, access to their GP, so is this kind of App the solution?

(RV): We have real concerns, as well as patients do, about the inability of many practices to be able to offer enough appointments and that’s simply because we haven’t had the funding over the last decade to support the expansion of the health service to be able to meet the growing needs of our patients. What General Practices are doing right now is seeing thousands and thousands – if not a million – patients today offering, you know, face-to-face consultations and seeing them in their surgeries, so that’s when patients approach them today. So that’s happening right now. What we haven’t got is the resources to be able to offer some of the IT technologies in every single practice. And the SoS’s commitment to IT is welcome, but we need to see that commitment translated into resources provided to enable every practice to offer this type of consultation.

(Int): But could this kind of technological approach actually help some of the pressure on GPs because people would consult a doctor over the phone rather than going to the surgery.

(AP): Well many practices, if not most practices, already offer telephone consultations. What they haven’t got is the IT kit to be able to offer smart phone consultations, or Skype-phone computer consultations, any many would like to be able to do that, if the technology was provided to them. But the other big difference is that every Practice that is open today will see any and every patient who lives within their area, and we have concerns about the model of which GP Hand has been built, which is primarily about looking at some of the relatively mobile healthy patients and not accepting every single patient who lives within their area.

(AP): I’m afraid Richard that is simply factually not true. We will ask when patients started the service, to ask patients to seek advice if they want to change their GP Practice to our Practice, if they have any clinical issues. Most patients seek advice and join us – we look after them, young, old, sick, healthy, our patients are across the border, and we don’t do that just in Britain, remember we look after one third of the population in Rwanda, and we do so in the United States, we do this in Canada. . .

(Int): But specifically, on this idea of whether you cherry pick patients, it’s likely that patients who don’t have very serious health problems, and maybe younger, are more likely to want to use an App on their mobile.

(AP) . . . but, why is that? If the patient is not very mobile, if the patient is very old, if the patient can’t wait a few weeks to see their GP, they’re significantly more likely to use a service that is continuously available. Many of our patients have mental health issues – they can’t wait for a few days or a few weeks to see their GP. That’s why they switch to us. A thousand patients today will choose to apply to GP at Hand, and then switch their GP Practice – one every three minutes.

(Int): Richard Vautrey, some GP Practices are worried about the fact that if their patients sign up to GP at Hand they then lose that funding, don’t they?

(RV): That’s exactly right. And the way that General Practice is funded at the moment is a balanced mechanism, so those patients who use the service less, and there are many patients that use the service more, and that overall, that compensates one for another. What we have concerns about is that this would effectively replace a personal service with an anonymous call centre and patients don’t want that.

(Int): And finally, Ali Parsa, this was something that commissioning groups in Birmingham were worried about and that was clinical safety – isn’t it better to see a doctor the next day.

(AP): No, it wasn’t clinical safety, you do see a doctor, not a call centre, face-to-face on your mobile and then see one in one of our surgeries. We will open up across the country physical surgeries, their issue was not that. It was an IT hitch that doesn’t allow its screening to be done with your local hospital and that IT hitch has been fixed. This is the future, and I encourage more and more patients to join it.

(Int): Okay thank you both, we’ll leave it there, let us know what your think via twitter.

Leave a comment

Dear chums

As you may have heard the Wirral Clinical Commissioning Group (CCG) has announced that it wants to close five local NHS clinics because Wirral residents “were confused about where to get help with urgent care”. The CCG, which is the local arm of NHS England, says it wants to “move care closer to home”.

Are YOU confused? Will YOUR care be closer to home if they close centres which are used by THOUSANDS of Wirral residents every week of the year?

Eastham Clinic; Victoria Central, Wallasey; Miriam Medical Centre, Birkenhead; Parkfield Medical Centre, New Ferry; Moreton Medical Centre

All these are due to close. Will a proposed ‘urgent treatment centre’ at Arrowe Park be closer to YOUR home?

You can find a petition from Defend Our NHS here:

https://www.change.org/p/defend-our-nhs-save-our-wirral-walk-in-centres?

Please sign and share with friends.

Thanks

Kevin

Leave a comment

Only a tiny fraction of the ocean of human physical and mental suffering reaches the shores of general practice, from where barely ten per cent of patients are referred for specialist attention. GPs have been trusted to refer judiciously, according to their clinical judgement, saving time and costs of specialist interventions. This gatekeeper role is widely acknowledged to be a key feature of the NHS, which keeps it at the forefront of cost effectiveness internationally.

In recent years, however, the rate of referrals began to rise – the opposite of NHS England’s strategic aim of shifting care away from hospitals. Some commissioners have been offering financial rewards for reducing the rate, a measure which many GP feel is unsafe. The reason for this situation lies in a basic policy conflict.

Since the Conservatives took power in 2010, NHS funding has been practically at a standstill, while costs have risen at a steady 6-7% per year, leading to the present catastrophic deficits with correspondingly desperate cost-cutting interventions. At the same time there has been an unprecedented focus on patient safety, resulting ironically, and tragically, in a culture of fear – reaching its zenith in the recent case of Dr Bawa Garba, a paediatrician who was struck off after a child died while she was working under in an understaffed department without senior cover. A culture of fear is overwhelming attempts to cut costs by doing less. Fearful of missing a rare diagnosis, GPs are investigating more than ever; fearful of a delayed diagnosis of cancer, GPs are referring more than ever; fearful of patient complaints, GPs are prescribing more than ever – with very few exceptions.

At a political level there is a refusal to acknowledge that the problems of high rates of investigations, referrals and prescribing are a consequence of fear, stress and overwork. It is impossible to do less if you do not have time to think more. The quadruple aim of improving patient and professional experience and the health of the population while decreasing costs has been in practice a single aim of reducing costs. By almost every measure, the other three aims (shown by the British Social Attitudes Survey and recent reports into the health of children) have worsened significantly. The only thing the government has succeeded in doing is screwing up (or down, depending on your perspective) the costs.

A few years ago I audited referrals of patients with headaches to our local neurology clinic. I read the referral letters to see if the reasons for referral were clearly stated and if there was sufficient detail about the clinical features, the treatment history, the social context and the patient’s concerns. Many letters had inadequate information and others were comprehensive but were about problems that a competent GP ought to be able to manage. Unsurprisingly all these ‘unnecessary’ referrals came from a handful of practices. We invited representatives to an ’education session’. The session was run by a neurologist to present the expert view while I was there to help think about some of the psychological reasons behind referrals. I told the group how, as a junior doctor working in A&E several years before, I had sent home a young man with a headache who was readmitted after my shift, unconscious and fitting. He had suffered a subarachnoid haemorrhage – a bleed from a vessel in his brain. I nearly gave up medicine then, right at the start of my career, and was very anxious about managing patients with headaches for years afterwards.

About a year before the education session I had met another patient who had suffered subarachnoid haemorrhages and together we spent several sessions teaching medical students about headaches. This way I got over my fear and became our practice lead for headaches. By sharing this at the session I helped the other doctors in the room to think about their own lack of confidence. A year later, referrals from the doctors that came from the practices represented at the session had reduced by between 50 and 100%.

The use of financial incentives to reduce GP referrals reveals a failure to recognise the complex reasons behind a referral. If I am anxious, stressed, rushed and lack time to think carefully and critically, it is much easier to refer patients so that they become somebody else’s problem. Working in the NHS in a time of austerity and digital technology I find myself with less time than ever to reflect or discuss cases with colleagues, while it is easier than ever before to order a wider range of tests. We need to shift our focus of attention onto the experiences of patients and health professionals and the quality of referrals and the outcomes, and then see what that does to cost effectiveness, not the other way around.

First published by the Centre for Health and the Public Interest

Leave a comment

On 15 April 2018 Doctors of the World (DOTW) and the National AIDS Trust (NAT) issued a joint statement that called on NHS Digital to immediately stop sharing patient details with Home Office immigration authorities.

DOTW and NAT believe that sharing confidential patient information with the Home Office will deter vulnerable migrant groups from seeking antenatal care or urgent care for infectious diseases.

Here is the DOTW statement:

MPs repeat demand for an end to NHS Digital sharing patient data

The House of Commons Health & Social Care Committee has, for a second time, called on NHS Digital to immediately stop sharing patient details with the immigration authorities. Expressing deep concern about the Government’s approach to sharing confidential patient information, a report released by the Committee on 15 April stated: ‘we believe that patients’ addresses, collected for the purposes of health and social care, should continue to be regarded as confidential.’

The report also states the Committee’s lack of confidence in the leadership of NHS Digital, citing the failure of NHS Digital to act independently of Government and its disregard for the underlying ethical implications of this data-sharing.

Currently, the Home Office receives information about patients from NHS Digital, the body charged with safeguarding patient data. The data is used to trace migrants, which creates a climate of fear where vulnerable people – including pregnant women and those who have been trafficked – are too afraid to access healthcare.

DOTW (Doctors of the World) UK and NAT (National AIDS Trust) have been campaigning for an end to this practice since it came to light in 2014. Both charities gave evidence in the Health & Social Care Committee’s initial hearing on the issue.

Lucy Jones, Director of Programmes at DOTW, said: “In our clinic, day in day out, we see the incredibly harmful impact the data-sharing deal has on our patients. It has reached a point where people do not want to give the NHS their contact information out of pure fear. While confidentiality is in such a precarious state, mothers are not accessing the antenatal care they need, public health is put at risk, and we fear this is only going to get worse”.

“Doctors of the World UK stand with the Health Select and Social Care Committee in opposing this dangerous information-sharing deal between NHS Digital and the Home Office, and are thrilled the Committee has taken such a strong stance. This view is also shared by the British Medical Association[1] and the Royal College of GPs[2]. As a healthcare charity, we believe in the right to healthcare for all. Yet this immoral deal works to scare some of the most vulnerable people in society from seeing a doctor.”

Deborah Gold, Chief Executive of NAT said: “It is scandalous that our data is being shared and our privacy corroded with less and less justification. As an HIV charity, we understand the importance of treating infectious conditions and limiting the spread of epidemics. When people can’t trust the NHS with their data, that good work is undone and we face a public health risk. There is nothing to be said for this practice, which deters people from accessing healthcare.

“Data sharing should have been stopped when the Health & Social Care Committee first called for it, and it certainly should stop now they have, for a second time, demanded an end to this short-sighted and unethical practice.”

Sign our #StopSharing petition to support our NHS Doctors and tell NHS Digital they are NOT Border Guards:

https://www.doctorsoftheworld.org.uk/stopsharing-campaign

[1]https://www.bma.org.uk/news/2018/january/patient-information-shared-with-immigration-officials

[2]http://www.rcgp.org.uk/-/media/Files/News/2018/RCGP-letter-to-NHS-digital-from-chair-march-2018.ashx?la=en

The Commons Health Select Committee says:

Dr Sarah Wollaston MP (Chair): NHS Digital are an organisation that the public need to have absolute confidence will respect and understand the ethical principles behind data-sharing [and they] have not shown us at all that this is part of what [they] are considering’.

Dr Paul Williams, MP for Stockton South and a practicing GP, questioned “what advice would you give to clinicians about what they should inform their patients so that this information is classed “with consent”?’

Luciana Berger, the MP for Liverpool, Wavertree urged NHS Digital to reconsider, calling the deal ‘a matter of life and death’ for an extremely marginalised and vulnerable patient group. 

Tagged | Leave a comment

This article was first published at HIV i-Base on 25 April 2018.

The revised BHIVA Standards of Care for people living with HIV are primarily produced as a reference for commissioning HIV services. It also describes a minimum standard of care that HIV positive people can use as a reference.

These 90-page guidelines were last updated in 2013 and this third edition was launched at the 4th Joint BHIVA/BASHH Conference in Edinburgh.

The Standards was produced by a writing group of more than 90 individual doctors, health workers and people living with HIV. It was a collaboration with numerous professional associations, commissioners and community groups.

The main changes to this edition include:

  • Reducing the number of standards from 12 to 8, but with each one covering broader themes.
  • A new section is included on person-centred care. This includes wider aspects of social circumstances, including stigma and discrimination, self-management, peer support and general well-being. The importance of these issues are emphasised by this being an early chapter.
  • Recognising the new U=U consensus: an undetectable viral load means HIV cannot be sexually transmitted – with or without a condom (although some sections of the document have inconsistent information on U=U that will hopefully be quickly updated).
  • The section on complex care has been broadened with more detail about access to specialist non-HIV treatment.
  • Another new section covers HIV across the life course covers HIV treatment and care from adolescence to end of life. This includes palliative care in the context that ART might continue to work well to the very end of life.

There are now eight chapters covering major themes. Each chapter and subsection includes quality statements and auditable targets.

Standard 1 covers testing, diagnosis and prevention and the 90:90:90 goals to eradicate HIV. All three areas are ways to maintain and develop combination prevention. This includes increased testing, early treatment, viral suppression and PrEP. Combination prevention helped bring about the dramatic reduction in HIV transmission seen recently in the UK. HIV positive people are important partners in combination prevention.

Standard 2 is about person-centred care. This has been described as “the fourth 90” and focusses on the whole person, not just HIV. BHIVA say it considers, “desires, values, family situations, social circumstances, and lifestyles. And in so doing, the needs and preferences of HIV positive people can be responded to in humane and holistic ways.” It challenges HIV stigma and discrimination and works towards equality in health and social care. Social inclusion and well-being – crucially aided by peer support – are key to person-centred care.

Standard 3 covers HIV outpatient care and treatment. Anyone newly diagnosed must be seen by a specialist HIV doctor within two weeks and given access to psychological and peer support. In some cases this referral needs to be within 24 hours. There is no gold standard for measuring engagement in care, but transfer of care should be seamless whether a person moves home, is incarcerated or simply moves to another clinic. Increasing numbers of children living with HIV from birth are now becoming adolescents. Management by interdisciplinary teams must ensure successful transition to adult HIV services. A qualified doctor must prescribe ARVs and monitoring according to current national guidelines.

Standard 4 is about complex HIV care. Inpatient care must ensure that an HIV specialist is included in the hospital multidisciplinary team. HIV positive people are living longer and often go into hospital for non-HIV related problems. They may be cared for safely and appropriately in a local ward or clinic. But they must also be supported by immediate and continued HIV expertise and advice. HIV positive people must have access to specialist services for other conditions such as cancer. But clear protocols and agreed pathways are essential for safe delivery of services. This section also includes supporting people with higher levels of need. It includes successful management of multiple long-term conditions, poor mental health, poor sexual health, and problems with alcohol or substance use.

Standard 5 is on sexual and reproductive health. It is important that HIV positive people are supported in maintaining healthy sexual lives for themselves and their partners. In addition, anyone at risk of other STIs and infectious hepatitis, perhaps through drug use, should be supported and given advice. Care should be given for contraception, fertility services, pregnancy planning, and access to abortion services. Care must ensure that babies are born healthy and HIV negative. Care for the mother’s health is key to giving birth to a healthy baby.

Standard 6 is on psychological care. HIV positive people should receive care and support that assesses, manages and promotes their emotional, mental and cognitive wellbeing and health. This should be sensitive to the unique aspects of living with HIV. HIV positive people have higher rates of depression, anxiety, addictions, self harm, and other mental health issues than the general population. Mental health needs must be screened on an annual basis. This includes screening for poor cognitive function that can cause memory problems and reduce ability to perform simple tasks.

Standard 7 covers HIV across the life course. This section looks at standards of care for everyone who is HIV positive. Management of ART should be individualised at every age. It starts with adolescents (aged 10 to 19 years) and young adults (aged 20 to 24 years). Education and personal development – as well as achieving healthy sex lives and relationships – should be supported by experienced sexual health advisers and specialist nurses.

The years from 25 to 65 are described as early to middle adulthood. Most people in this age group are diagnosed as adults. Care for early diagnosis and treatment should include peer support as well as psychological support. HIV positive people should be supported in having healthy and fulfilling sex lives and engaged in treatment as prevention (U=U).

The over 65s – whether newly diagnosed or long-time positive – should be given access to treatment for complex comorbidities. This is an area of significant emerging knowledge and will likely develop over the course of these standards. Successful care may be achieved through co-speciality clinics, mentoring schemes, or by identified experts in advice and guidance. Palliative care is now included here. Palliative care ensures that the individual and their family are supported, receive appropriate care that meets their needs and preferences, and do not experience unnecessary suffering

Standard 8 covers developing and maintaining excellent care. This standard covers knowledge and training to ensure specialist services are provided. It sets standards for monitoring, auditing, research and commissioning. It also sets standards for public health surveillance, confidentiality and information governance.

Roy Trevelion was a community representative on the Standards writing group.

COMMENT

These comprehensive Standards are very welcome.

The community was involved at every stage from planning to the final draft, with at least one community representative on each chapter and more than 15 UK-CAB members collaborating overall.

The result is a comprehensive benchmark for health and wellbeing for HIV positive people.

All sections provide bullet points for measurable and auditable outcomes and must be promoted in primary and secondary care, health & social care, public health, and local authority healthcare provision.

As bureaucratic and structural changes affect the structure of HIV services, these Standards should be a reference for ensuring that high-quality care for HIV positive people is maintained.

The inconsistent messaging over undetectable viral load and HIV transmission will hopefully be corrected. As the publication is only available in PDF format, this should be relatively easy. Several formatting problems, including difficult legibility (light font, justified text) would benefit from being revised. 

It is good to see the inclusion of HIV positive people in the photographs throughout the report, supported by the UK-CAB and Positively UK.

Reference

BHIVA. British HIV Association Standards of care for people living with HIV 2018. April 2018.
http://www.bhiva.org/standards-of-care-2018.aspx

Leave a comment

I am just writing this as me. It isn’t going to be the most perfect piece of prose, partly because the information has come from my husband/carer and because I still feel the fear whenever I think about it. My brush with co-payments was traumatising for me, my husband and could have had very serious consequences – including death.

I live with a rare, and potentially fatal condition. It has been what they call “brittle” from the beginning. Nevertheless, I am well insured and of course carry all necessary documents for health treatment in an EU country. What could possibly go wrong??

Early one morning while on holiday in an EU country I started to feel nauseous. This is a warning sign of a crisis. The nausea progressed to projectile vomiting, then voiding, as my temperature plummeted and I began to lose consciousness. My husband phoned the local health centre. They spoke English and he fully explained the danger – left too long my organs will shut down, and the end game is potentially death.

The first words spoken were – “that will cost you 180 euros. “OK” said husband, but he was not at all confident in any system that could put the money first.

“Bring her down to the centre” were the next words down the phone.

“But she is unconscious and covered in sick” said hubby, “I can’t just put her in a taxi”.

“We don’t do home visits” was the response.

“I don’t know the system”, said my husband, “I can’t bring her anywhere, what do I do?”

Well it might seem obvious, but my husband was panicking

“Phone an ambulance”.

Hubby did, and the ambulance came, but the co-payment fiasco didn’t end there.

The ambulance people were caring and somehow got me downstairs and into the ambulance.

We then proceeded to go past at least one gleaming private hospital, slowly down some narrow country roads, and well out of town to the nearest public hospital.

I was off loaded.

Alone with me in a room, hubby was then asked for another co-payment. “just go to the desk”. Imagine if it was your loved one, and you were asked to leave them in a crisis, and alone.

The doctor came and told him to hurry, go to the front of the queue as an emergency, as she wanted to start treatment urgently. Hubby ran.

Once back he could talk about my medical history, allergies and so on. The doctor was knowledgeable, efficient and kind. It doesn’t take long to bring me round from a dangerous situation, and I can usually get home in the NHS in around 6 to 8 hours, but even so, I was told to get a taxi probably a bit earlier than I would have needed/wanted in the UK.

Going home the taxi driver treated us to a very informed chat on how this was a trojan horse and the end of their public healthcare system. A few days before we had a taxi driver talk on TTIP and chlorinated chicken.

If anyone is tempted to think we would do it differently under the current model of defunding the NHS, just think of the brilliant success of the co-payment systems we have already.

The Care System has always been co-payments for the less poor. I will not say the rich, as demands for some contribution are made to many we would not consider that well off. The situation is dire: abuses of human rights, starvation diets, neglect; the list goes on. There are repeats of the TV programme “Waiting for God”. Not even the wealthy can ensure they are not being herded and milked for the benefit of the shareholders. It is the law.

Then there is dentistry. I was warned years ago that dentistry was the pilot for the NHS direction of travel by a totally distraught dentist, who felt his patients no longer came first, and the less well-off would be excluded. Hubby has paid £600.00 for dentures (just a couple) under the NHS system. They are not fit for purpose. Treatment is basic now, and in my town people are often seen with big gaps and rotten teeth. The old pull it out by using the door trick has even re-appeared. It is tempting to go private if you have the money, and friends have paid thousands to private dentists, though they are against the concept.

Co-payments will have the most terrible impact on the sick, disabled and poor. They will be excluded, frankly, so the worried well can have blue fitted carpets and no queuing. It will fix the NHS in the same way as taking those truly needy cohorts out and shooting them would also fix it – just it’s more acceptable/less obvious.

I have not heard a single person as a patient under the co-payment scheme who isn’t well off express that they liked it. Quite the opposite, and I work with healthcare staff and academics in the US and Australia. They know it puts their lives on the line.

Like dentistry a “reasonable” co-payment will soon start to look like quite a chunk of your money – loads more than we all first thought. And for what? This was posted on our SHA Website and I’ll repeat it here:

NHS Dental Care Faces a Severe Collapse

One of the health concerns neglected by the NHS is dentistry regardless of the fact that teeth matters as much as any other part of our body. As revealed by the British Dental Association in September 2016, the NHS had to bear a cost of £26m when around 600,000 people in a year made nugatory appointments with GPs over dental issues. Though this statistic has resulted in ridicule, yet in all honesty, it is the government, not its citizens, who should be embarrassed.

It is the NHS bills that are drawing patients away from the official government system and driving them toward GPs for their dental problems. As indicated by the BDA’s new analysis, this practice might soon outclass government financing as the main revenue source for NHS dentistry.

The NHS charges for dental services were first instituted in 1951 to bring down the demand. The BDA has named these charges as “health tax”, which veil actual trims in the service and debilitate the patients most needing care. Due to the incurred charges, about 1 of every 5 patients has deferred treatment as per the official findings.

The government funding for the NHS has been cut down by £170m since the Tories first made it to No 10, and it is hoping that patients should constitute the shortage. In 2016, dental charges were climbed by 5%, and they are anticipated to take the same hike even this year too. Considering the 16 years of time, it is assumed that majority of the NHS budget for dentistry will be financed by patients instead of the central government. But what is the use of the NHS if it is not a free service at the required time, and treatment isn’t according to one’s need but ability to pay?

Children are entitled to avail free NHS dentistry – but even they are being pulled down by the government as it is unable to meet the demand and offer enough dentists. Earlier in 2016, a letter was signed by more than 400 dentists exhorting that dental care in Britain is falling to the levels of “third world”. According to them, the NHS dental system in England is ill-equipped for the purpose. These crises are of grave nature; about 62,000 people mostly including children turn out to be at the hospital each year due to tooth decay; half of the adults haven’t been to a dentist for the past two years; and one of every seven kids hasn’t gone to a dentist since the age of eight.

People in Britain are already paying higher bills for fundamental care, and add a bigger sum of a dental budget by submitting these charges than their correlates in the devolved countries – systems of which have become less dependent on charge income throughout the recent decade. To deal with this gap, the BDA is sending information posters to more than 8,000 NHS dentists all through England to help picture patients’ feedback on the eventual fate of the charge.

When dental charges were made a part of the NHS in 1951, Nye Bevan who was the formulator of the NHS resigned from the service in protest. Today, after sixty-five years, the service is damaged by inadequate investment, exaggerated charges, and a shortage of dentists. There is a genuine need to form a government-funded NHS dentistry which wouldn’t rip off the patients. However, as of yet, we are going in the other direction of which the consequences will be borne by lower-income Britons.

Co-payments in health to me sound very much like the position refugees are suffering under this government according to the latest briefing by Asylum Matters. I have approached them to ask to reproduce the paper and recommendations, and been given the go ahead. This will follow shortly.

Finally: Imagine:

You have a heart attack in a local park. You and your partner set off in the ambulance only to discover that you must pay, and your wallets and cards are locked up at home. Precious time is lost chasing the money. Your partner is scared you will die when they are away getting the plastic.

You just gave every bit of spare funding you had for the youngest child/grandchild to access university for 3 years, and then you get cancer (or another serious and maybe longer-term condition). It is might be difficult to fund all these co-payments to your GP and specialists. It is not worth a blue carpeted half empty waiting room. Under the current defunding you won’t get that anyway. I have loads of co funding horror stories from the USA.

Tagged | Leave a comment

The government is using NHS patients’ personal information for immigration enforcement

The Home Office, the government department in charge of immigration, has permission to access NHS Digital records of a patient’s last known address, date of birth, GP’s details and the date registered with a GP. They can use this information to trace patients, which can result in patients’ homes being raided, sometimes leading to them being detained and deported.

Doctors of the World

Doctors of the World say their toolkit:

“Is a toolkit for healthcare professionals and GP practices who want to provide confidential and welcoming services for all their patients including refugees, asylum seekers and undocumented migrants. This advice complies with NHS England guidance on GP registration and NHS guidance on secondary care. Taking the suggested steps in this guide will also help GP practices demonstrate to the CQC that their service is responsive to patient’s needs.”

And they add:

“Deterring refugees, asylum seekers, victims of trafficking, and other vulnerable people from getting healthcare has serious health consequences. At Doctors of the World’s clinics, we regularly see pregnant women avoiding antenatal care, as well as cancer sufferers and parents with unwell children who are afraid to see a doctor. Ten per cent of our patients already do not access NHS services because they fear arrest. We fear this will now get worse.

“Patients who don’t have a GP are more likely to end up going straight to A&E and to leave conditions until they are more advanced and more expensive to treat.

“And, of course, when more people are treated for illnesses, society becomes healthier for everyone.

Tagged | Leave a comment
%d bloggers like this: