People with Parkinson’s forced to hide or lie about their condition

Guest Blog by Steve Ford, Chief Executive, Parkinson’s UK

New research, released by Parkinson’s UK to mark Parkinson’s Awareness Week (18th – 24th April), shows that nearly two fifths (37%) (1) of people living with the condition have felt the need to hide their symptoms or lie about it – cutting people off from vital support at a time when they’re trying to deal with a life changing diagnosis.

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127,000 people are living with Parkinson’s in the UK, with one person being diagnosed with the condition every hour. (2)The charity estimates that 42,000 people are delaying sharing this diagnosis with someone close to them. (3)

Those who delayed telling family or friends said it was because of:

• Not knowing how to bring it up (36%)
• Not wanting to accept their diagnosis (33%)
• Being unable to find the words (28%)
• Thinking they would be stigmatised (21%) or look weak (19%).

The charity is concerned by the findings, which reveal a worrying level of emotional repercussions for people diagnosed with Parkinson’s, with over a third of those surveyed experienced negative emotions in the year following their diagnosis.

Over a third (37%) of those surveyed experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people with Parkinson’s.  Many people reported feeling ‘like their world had ended’ (18%), ‘like they were grieving’ (14%) or ‘like they didn’t know who to turn to’ (13%).

For David Plummer, wildlife photographer, from West Sussex, after six months of on-going tests, being diagnosed with the condition caused him panic, claustrophobia, and difficulty sleeping. And it’s still something he doesn’t like to talk about –often trying to hide it if symptoms are showing.

Positively, nearly half of people who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’, while one in four reported feeling relieved (27%), and 15% say they felt glad they didn’t have to hide their symptoms anymore.

As the UK’s leading charity, supporting those with the condition, Parkinson’s UK is determined to that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations. Offering advice, information and support to anyone affected by Parkinson’s, through their website www.parkinsons.org.uk or calling their confidential helpline on 0808 800 0303.

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1. Based on a prevalence of 127,000 people living with Parkinson’s in the UK, this equates to 46,990 people
2. Parkinson’s UK (2009) Parkinson’s prevalence in the United Kingdom
3. Estimated from a figure of 33% of those surveyed and based on a prevalence of 127,000 people living with Parkinson’s in the UK.

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Ovarian Cancer – Make women AND GPs more aware of the symptoms

Guest Blog by Annwen Jones, Chief Executive of Target Ovarian Cancer

In March every year, women with ovarian cancer, their family and friends, the ovarian cancer charities, health professionals, corporates and more all come together for Ovarian Cancer Awareness Month – to raise awareness and funds for ovarian cancer.

Ovarian cancer can be devastating. Far too many women are diagnosed late, once the cancer has already spread, making treatment more difficult. But we know that when a woman is diagnosed at the earliest stage, her chance of surviving ovarian cancer for five years or more doubles from just 46 per cent to more than 90 per cent, which shows why early diagnosis is so vital.

There have unfortunately been very few drugs developed for the treatment of ovarian cancer in the past 20 years, and there is an urgent need for progress. If we matched the achievements in breast cancer in the last 20 years, over 3,000 more women would survive each year. This is why, very early on as a charity, we launched a UK-wide research grants programme specifically for ovarian cancer.

ovarian-cancer-in-numbers-infographic-branded-hi-resOver a quarter of women are diagnosed through emergency presentation – meaning they are diagnosed very late, with more invasive treatment and lower survival chances. This figure is falling, as a result of the fantastic work that has already been done, but it is still unacceptably high. I speak far too often with women who have been diagnosed late. It is their stories, not the statistics, that give me the passion for improving early diagnosis, for raising awareness.

This March, we’ve launched a campaign to make noise and shout out about the symptoms, because early diagnosis saves lives. So before I go any further, here they are:

  • Persistent pelvic or abdominal pain (that’s your tummy and below)
  • Increased abdominal size/persistent bloating – not bloating that comes and goes
  • Difficulty eating or feeling full quickly
  • Needing to wee more urgently or more often than usual

These symptoms will be frequent (happening more than 12 times per month), persistent, and new to you. Anyone who is regularly experiencing these symptoms should see their GP and explain that they are concerned about ovarian cancer.

Women who are concerned about ovarian cancer should try to keep a diary of how they are feeling – using our Symptoms Diary app or downloading a version from our website.

social-01During Ovarian Cancer Awareness Month this March, we’re asking everyone to Start Making Noise: #StartMakingNoise. Shout about the symptoms. Early diagnosis saves lives. We’re asking everyone to make a noise about the symptoms – to share them on social media, to tell your friends. We have a range of fundraising activities too – you could Bake Some Noise, or Dress Louder to raise money. Whatever you choose to do, please make sure that you and your loved ones are aware of the symptoms of ovarian cancer.

Late diagnosis is a major issue for women with ovarian cancer and their families. Ovarian Cancer Awareness Month gives us all an opportunity to come together to make women and GPs more aware of the symptoms and the vital importance of early diagnosis. It’s so essential that we all work together to make sure every woman in the UK has the best, rather than the worst, chance of survival.

The UK’s leading ovarian cancer charity, Target Ovarian Cancer works to improve early diagnosis, fund life-saving research and provide much-needed support to women with ovarian cancer. 

2020health’s policy work on Cancer includes an  event recently held in Westminster on ‘Personalised Medicine‘ which included a section on cancer drugs.  Through its other work, it has also advocated for the need to improve early diagnosis and treatment.

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Do we care enough to ask what is behind the biggest recent annual rise in death rates?

The Telegraph lead with provisional statistics from the ONS this morning on the steepest annual rise in death rates since the second world war. They are right that alarm bells should be ringing, and urgent questions should be asked:

Is this related to the data in yesterday’s Mental health Taskforce Report showing a scandalous lack of services for those with serious mental illness, which is on the rise and which we know causes premature death.

Is it the cuts in social care biting, meaning people can’t leave hospital and return home because there is no one to care for them, relation, friend or state?

Is it related to the epidemic of loneliness, where social isolation actually leads to losing the will to live?

Or are we already reaping what we have sown in lifestyle diseases such as obesity and liver disease (we have the worst incidence in Europe) from overconsumption of food and alcohol? We have had countless public health warnings that poor lifestyles will cut years from our life expectancy, and we’ve gone on sending out mixed messages about eating and drinking and still have no effective obesity strategy.

Once again this research SHOULD force a public discussion about the true costs of public services, and remind us of our role in caring for our neighbour. The last question is, do you care enough to demand that debate?

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Mental Health Taskforce show services are still like having ambulances for only half the country

Our Comment on the Mental Health Five Year Forward View, published February 15th.

Mental health services are still like having ambulances for only half the country – Questions on needs and costs are still unanswered.

2020health welcomes the emphasis on parity of esteem, practical whole-life support and reducing inequalities at the centre of the Mental Health Taskforce’s Report, out today. The report contains 58 recommendations, and we welcome the government’s commitment to an extra £1bn investment in services, in the workforce and in data collection for informed decision making.

Julia Manning, Chief Executive of 2020health said: “Real progress is being made on reducing the stigma and increasing the understanding of mental health. Anyone with experience of mental illness, either through their work family or friends, knows that there is a dual investment problem: inadequate prevention and early intervention, and insufficient provision for those with established mental illness.

“The recent figures showing a 21% increase in suicides amongst mental health patients in England over the last 3 years[1] is a heart-breaking reminder that demand for support and treatment is not being met. There is massive variation in services across the country, and the only time you find out whether you are in an area that actually has a service is when you or someone close to you needs help. This is a scandalous situation which if it were the case for ambulances, would be causing national outrage.

“The report calls for a fully-costed workforce review to be undertaken, but nowhere in the report do they estimate the actual cost of providing a quality service across the country, so that as when you call for help from the GP and ambulance service, you know there will be the appropriate person to assist you.

“An extra £1bn sounds a lot but budgets over the past few years have been cut[2] so this could simply be a return to previous levels of spending. Budgets are so fragmented between  CCGs, Local Authorities, NHS England and Innovation funds it is difficult to know what the true figures are. What we do know is that up to 13% of the NHS budget went on mental illness, when it constitutes 23% of the burden of disease. A £1bn increase is less than a one per cent increase in spending on mental illness (total NHS Budget £113bn).

On reducing inequalities:

“We understand that this is a five year plan and that the authors have wanted to keep their demands realistic, but they have missed the opportunity to alert the public to the massive gulf in provision of services for people with mental illness. Even if everything this document ask for is delivered by the government, we would still have 40% of people not getting support when they first experienced psychosis (Recommendation 16), and we wouldn’t know whether there was enough provision for women with post-natal depression or men with anxiety or those living with severe mental illness  (Recommendations 14, 15 & 19). As the Report says itself, we simply don’t have the data in many cases to know what the level of need is.

“What we do know is that there aren’t enough doctors[3], especially for children, and stricter criteria for giving help to young people means that fewer children are getting the help that they desperately need. However there are evolving, effective digital interventions and we are glad that promoting these have been supported (Recommendation 28).

On practical whole-life support:

“In 2020health’s 2015 Head of Wellbeing report[4], we described the concept of a senior, strategic, full-time coordinator of whole-school wellbeing who would prioritise prevention and early intervention. A named mental health lead in schools is not enough. We think especially that there is a real opportunity for using new digital technologies such as apps for anxiety and online support forums that are second nature to young people. We remain convinced that a Head of Wellbeing position could bring about game-changing improvement in the mental and emotional experience of young people, and their teachers.

On parity of esteem:

“In our Whole in One report on depression (2015), we also called for more community based therapy, better collation of evidence and data and support in the workplace, so we are pleased to see this reflected by the Mental Health Taskforce. However if they were serious about parity of esteem, they would have asked as we did for NICE guidelines (purely advisory) to become recommendations (which carry legal weight). At present, only advisory guidelines appear to apply to all treatments (including medicines) for depression, as well as service access and treatment pathways (see NICE guidelines [CG90]).[5]

Our Key concerns:

  • £1bn sounds a lot but it could simply be returning us back to previous spending levels
  • Criteria for referral to CAMHS is not mentioned at all; access to CAMHS is severely restricted as the workforce is so overstretched – what improvement can parents and schools expect to see?
  • We need to know what all agencies with budgets for mental illness are spending on mental health, year on year, not just CCGs
  • Prevalence surveys once every seven years on mental illness not frequent enough – we haven’t done a survey on children since 2004
  • Government should calculate the national need and budget for tier 2, 3 and 4 mental health services so the public understand the level of need and cost

– Ends –

MHT FYFV Report References to:

Costs

Page 3

  • Mental health problems represent the largest single cause of disability in the UK. The cost to the economy is estimated at £105 billion a year – roughly the cost of the entire NHS.

Page 4

  • For example, in the case of Type 2 diabetes, £1.8 billion of additional costs can be attributed to poor mental health. Yet fewer than 15 per cent of people with diabetes have access to psychological support. Pilot schemes show providing such support improves health and cuts costs by 25 per cent.

Inadequate provision

Page 4

  • Fewer than 15per cent of localities provide effective specialist community perinatal services for women with severe or complex conditions, and more than 40 per cent provide no service at all.

Page 7

Mental health accounts for 23 per cent of NHS activity but NHS spending on secondary mental health services is equivalent to just half of this.

Page 9

  • The Care Quality Commission (CQC) found that just half of Community Mental Health Teams (CMHTs) are able to offer a 24/7 crisis service today.
  • Only a minority of A&E departments have 24/7 liaison mental health services that reach minimum quality standards, even though peak hours for people presenting to A&E with mental health crises are 11pm-7am.
  • There has been no improvement in race inequalities relating to mental health care since the end of the 5-year Delivering Race Equality programme in 2010.

Page 11

  • The provision of psychological therapies for people with common mental health problems has expanded hugely in recent years. But it is still meeting only 15 per cent of need for adults.

Page 24

  • Comprehensive liaison mental health services are currently available in only one in six (16 per cent) of England’s 179 acute hospitals. The situation is better for paediatric mental health liaison, with 79 per cent of hospitals reporting cover, but these frequently do not operate out of hours.

Comment * on Recommendation 14: NHS England should invest to increase access to integrated evidence-based psychological therapies for an additional 600,000* adults with anxiety and depression each year by 2020/21 (resulting in at least 350,000 completing treatment), with a focus on people living with long-term physical health conditions and supporting 20 000 people into employment. There must also be investment to increase access to psychological therapies for people with psychosis, bipolar disorder and personality disorder.

*In 2013/14 just over 700,000 individuals were treated by IAPT services; 319,904 individuals who were initially recognised as ‘clinical cases’ finished a course of treatment; 143,833 (45%) were diagnosed as recovered (HSCIC, 2014a)[6]

[1] Mental health deaths in NHS up by more than a fifth over three years, new figures show- http://www.independent.co.uk/life-style/health-and-families/health-news/mental-health-deaths-in-nhs-up-by-more-than-a-fifth-new-figures-show-a6834196.html

[2] http://blogs.channel4.com/factcheck/factcheck-mental-health-budget-cut/20617 e.g. 43 out of 56 mental health trusts in England surveyed found there had been a real terms cut of 8 per cent in funding between 2010/11 and 2014/15, worth around £600m

[3] MHT Page 35: Health Education England indicate a 6.3 per cent vacancy rate for NHS consultant psychiatrist posts, and over 18 per cent of core training posts in psychiatry are currently vacant. Psychiatry has the slowest rate of growth and the highest drop-out rate of any clinical specialty. Between 2013/14 and 2014/15, referral rates increased five times faster than the Child and Adolescent Mental Health Services (CAMHS) workforce

[4] Manning J and Paxman J: Head of Wellbeing – an essential post for secondary schools? 2015

[5] 2020health: Paxman J and Manning J: Whole in One: Achieving equality of status, access and resources for people with depression 2015 – page 34

[6] 2020health: Jon Paxman and Julia Manning: Whole in One: Achieving equality of status, access and resources for people with depression 2015 Page 15

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What can be done to help rocket boost MedTech into everyday healthcare?

Guest Blog by Dr Michelle Tempest, Partner at Candesic, Health & Social Care Consultancy 

Despite MedTech being central to the future of healthcare, digital implementation often struggles to get into the top 3 priorities of stakeholders who have to contend with A&E four hour targets, delayed transfers between care settings, chronic staff shortages and a savings gap of over £22bn. For those who have invested in a radically changed IT system, such as Addenbrooke’s hospital in Cambridge (who imported the EPIC system from the US) it did not offer immediate success and instead toppled the heads of the CEO and CFO of the NHS trust.

In November 2014, the Government highlighted four elephants in the room that hold back IT healthcare progress:

1) Too much bureaucracy
2) Lack of accountability
3) High cost
4) Concern over data security

However, perhaps there is a fifth elephant? The mother of all the others: the need for pro-active MedTech procurement. Linking IT from home to hospitals is key to unlocking future healthcare. Failing to get systems to communicate with each other is the nail in the coffin for any promising UK MedTech industry.

Reviewing current and developing MedTech products in terms of the ‘home to hospital pathway’ it is clear that there are eleven distinct markets (Fig.3). Taking this a step further and individually analysing over 300 different technologies, less than 1% of products the ability to communicate up and down the care pathway (Fig.4). This lack of inter-operability is an immediate snag to current IT procurement, whose job it is to create integrated and technology-enabled, linked care systems.

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Slide4

Thus far procurement has oscillated between top down command and control national arrangements, to bottom up ‘letting a thousand different flowers bloom’.  The analogy is that procurement has tried and failed with forced marriage and failed on random selection. So, perhaps it is time for MedTech procurement to be brought into the modern age that it aims to inhabit? One way help navigate and improve procurement would be for a match-making approach – a sort of ‘MedTech Tinder’.   ‘MedTech Tinder’ could proactively use ‘intelligent digital matching’ which could learn to be better at matching than Cupid himself. Indeed such algorithms that match suppliers and consumers was initially the ‘market design’ of Nobel prize winning economists Al Roth and Lloyd Shapley.  This method is no stranger in the clinical setting where Professor Roth’s best known example is the kidney exchange platform that matches donors and recipients which went onto increase the number of feasible life-saving operations. Any new MedTech Tinder matching platform could be as simple as A,B,C:

A. Accountable:  account for all current IT/ digital/ MedTech systems across acute and community settings,
B. Bridge knowledge gap: bridge the information gap across NHS and social care and track progress on communication between systems, aiming to increase inter-operability,
C. Collaborative:  highlight similar issues, proactively keeping purchasers and providers informed, matching innovators to problems and solutions to care organisations.

Such a ‘MedTech Tinder’ platform need not be expensive to implement and would highlight when a solution has already been acquired by one part of the health and social care system and the transparency would help keep costs down.  The Five Year Forward View explicitly requested to unleash “energy and enterprise” and in parallel with high speed broadband and 4G services and Wi-Fi in all hospitals – the stage is set for such an advancement. So, to help MedTech find love this winter, ‘MedTech Tinder’ could prove to be the match made in heaven for the UK export MedTech market.

#Letsdoit #MedTechTinder #MedTechmatch

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The Dynamic Shift: People want to access MedTech at home

Guest Blog by Dr Michelle Tempest, Partner at Candesic, Health & Social Care Consultancy 

One of the most important paradigms in healthcare is the fundamental shift in the doctor-patient axis. The old fashioned paternalistic doctor-patient relationship, where the doctor held the balance of power and only shared information with the patient when they thought it was relevant, has been completely turned on its head by digital healthcare. Now each individual can harness the power of technology to store, measure and monitor pretty much everything about themselves, often innocuously via their mobile phone.  This means that an individual can collect all the information they want and personalise it to measure fitness, wellness, mood, weight, menstrual cycles; there is not much you cannot track about yourself, if you so wish.  In fact there is so much interest in health consumer apps that a central National Information Board has been set up to accredit and kite mark apps, devices and digital services.

This inescapable, irreversible shift to ‘patient power’ means that every person has the ability to become an expert about their own health. Professor Eric Topol in his book ‘The patient will see you now’ describes this paradigm as the death of medical paternalism and the democratisation of healthcare via the ‘quantified self’.

How will medical teams cope with the on-coming tsunami of information?

The development of this personalised digital explosion poses the frequently quoted data quandary of the 3 V’s: Volume, Velocity and Variability. Such vast data quantities will soon reach Exabytes amounts. To put this in context it would take a single doctor several lifetimes to read this amount of information, let alone process it.  So, ‘Artificial Intelligence’ learning algorithms will naturally come into play employing parallel computation and parallel processing. Medical teams will want immediate access to ‘what has changed’ or ‘what is an outlier’, whilst healthcare consumers will want to link their own personal data feeds to help with early diagnosis. Similar such feats are already emerging in financial technology (FinTech) by linking professionals and customers more directly to banking algorithms.

The doctor of the future will have to be more like Sherlock Holmes rather than his associate, Dr Watson, who was frequently sent to check up on one variable at a time.  Future Sherlock’s will need to build up pictures of data to help solve medical riddles.

As yet clinical teams and IT systems are not set up to do this, so how will they succeed?

One current stumbling block is that data is stored in siloes with little inter-operability. Data is collected in a linear fashion as if it is preparing to help solve a 2D puzzle. But Sherlock Holmes would never have found ‘who done it’ unless he had developed a 3D way of problem solving. To solve such riddles there is a journey that is yet to be taken.

It is actually a similar journey that is currently underway across the rest of the health and social care setting, where separate, siloed disciplines of: Specialist, hospitals, mental health, community, care homes and care-in-the-home need to be integrated.  Data should be at the forefront of this journey and as care moves from being reactive to proactive, the same step change has yet to happen in MedTech.

#Letsdoit #MedTechTinder #MedTechmatch

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2016: The Year for UK Medical Technology (MedTech)

Guest Blog by Dr Michelle Tempest, Partner at Candesic, Health & Social Care Consultancy 

Technology is everywhere. Your mobile phone is probably close at hand ready to break down the physical barriers of bricks and mortar. Technology rapidly advances in accordance with Moore’s law, which states that processing power doubles every two years.

Applications in healthcare are growing exponentially and the market develops with every blink of an eye (fig 1).  So how can decisions in purchasing technology ensure that they are ready for the market of tomorrow?  Currently procurement decisions across the MedTech spectrum are made in isolation. This article highlights the complex environment facing procurement and the weight resting upon the shoulders of people who do this important job and calls on the English Government to develop a pro-active matching scheme for MedTech to help the UK win the global race in the development of integrated IT, with interoperability from home to hospital and back home again.

Slide1

Overview
We are living through an age where mobile telecommunications and digital services have changed everything, well almost everything.  The pace of change in robotics, the Internet of Things, data analytics and other disruptive trends have created increasingly accurate predictions, even of consumer spending habits. In health and social care, it is perhaps understandable that the rate of adoption has been much slower due to security, acuity, risk and multiple stakeholders.

The post digital Brave New World is a far cry from when the NHS was born in 1948, and an enlightened NHS MedTech baby has yet to be born. Other sectors have managed to keep pace alongside the Internet age, where more than 80% of UK adults use the internet, and almost as many carry a smartphone. In banking over 22 million people use online banking and each week 18.6 million use their mobile phone to make transactions. This has helped cut costs by 20% whilst customer satisfaction has soared.  In the airline industry, 70% of flights are booked on-line and the paper boarding ticket has almost disappeared with most people choosing digital e-tickets.  Compare this to the NHS: 2% of consumers report any form of digitally enabled interaction.  Sadly the experience remains stuck in the days before the Internet or smart phones.

The NHS has a chequered history when it comes to technology. The infamous NHS National Programme for IT, part of the Connecting for Health catastrophe, cost the taxpayer around £9bn over 10 years and delivered virtually nothing. So 2016 must be the year for the NHS to embrace MedTech, else other countries will reap the rewards.  The USA is so eager to win the global MedTech race that digital health spend has sky rocketed from £0.7bn in 2011 to £2.8bn in 2015 (Fig 2).

Slide2

#Letsdoit #MedTechTinder #MedTechmatch

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