What is it like to depend on medicine to treat endometriosis?

 

I have endometriosis.

 

I was diagnosed when I was 16. In the ten years since diagnosis, I have taken Loestrin 20 tablets. Over the years the doctors looking after me have tried three different medicines but to no avail. I have tried mild painkillers, lifestyle and dietary changes too. These were largely experimental medication changes. Together we made various attempts to make things better for me but this inconsistency in my medicines resulted in significant negative changes to my health.

 

I kept coming back to Loestrin 20.

 

And that’s fine because it works. It has been the only medicine that I have taken for endometriosis that has helped me to continue daily life.

 

You probably think I’m making a meal of this or overreacting but please believe me that this medicine helps me to stay well both mentally and physically. The thought of not being able to access it anymore would be terrifying.

 

And that’s what brings me to my story that happened in November 2019. The day everything changed and my life took a seismic hit below the waterline.

 

This was the day that I found out after attempting to collect my prescription from my local pharmacy that I can no longer receive my treatment for endometriosis.

 

At that time I had my last pill and that was it. I was devastated, anxious and uncertain about how the future would unfold. This situation was such a travesty because my health prospects were looking really good.

 

So, of course, I asked why?

 

Apparently, the medicine could not be sourced from anywhere because of ‘manufacturing’ issues or ‘undisclosed issues’ I was told by different places.

 

I sought help from my Doctor, from NHS 24 and other pharmacies. It is a birth control pill for the general population so I was told that my Doctor can simply put me on another pill and I can get on with life as normal. It didn’t seem to be considered a drastic change with challenging knock-on effects.

 

Well, this is the problem you see because Health Professionals often see these things in a binary way and don’t consider fully the impact on us patients.

 

It is quite frankly not the case that this was a minor problem with an easy fix for women with endometriosis. I was upset about the undermining of the severity of endometriosis and changes like this to treatment.

 

I was absolutely terrified tonight about what was going to happen to my health. If I was to be placed on a new pill to ‘test the waters’ for the subsequent for next 3-6 months I would once again be playing another game of risk with my physical and mental health.

 

The times in the past this was attempted my life was turned upside down. I was not ready for this again. I felt sick. Gobsmacked. And angry.

 

I wasn’t informed by my doctor who signed off on the prescription. I didn’t hear from anyone until I went to the pharmacy and searched online.

 

What was going on? Why were patients on this medication not informed?

 

No letters, emails or phone call.

 

I was very disappointed about this on behalf of all women with endometriosis, especially those like me who have been given no warning of these supply problems.

 

Even though these events happened some time ago I have some questions for pharmacists reading this blog that I really hope they can answer:

 

Can anyone shed light on this situation?

 

What’s the plan ahead for changes to medication supplies for chronic conditions like endometriosis?

 

How are medication shortages communicated with Doctors?

 

Who or what is to blame for these shortages of essential medication?

 

I hope this blog triggers at the very least a conversation about this issue and that we can begin to work towards a solution. Obviously, my medication is extremely important to me but I cannot imagine how frightening it must be if my example involved a life-saving medicine.

 

The author of this article wishes to remain anonymous. 

 

 

Companies advised to stockpile six weeks of medicines for Brexit

 

Chief Commercial Officer for the Department of Health and Social Care Steve Oldfield has written a letter outlining information relating to the end of the transition period (TP) on 31st December 2020. The letter relates specifically to a number of areas in relation to the continuity of the supply of medicines and medical products to the UK.

 

This follows the government’s recent confirmation that the TP will cease as planned on 31 December 2020 and there will be no extension.

 

Commenting in the letter Chief Commercial Officer for the Department of Health and Social Care Steve Oldfield said:

 

“First, I would like to thank you for the continued, crucial, role you play in helping ensure continuity of medical supplies. This has already been a challenging year due to the global impact of COVID-19 and we know many of your supply chains remain under severe strain.

 

“At 11pm on 31 December 2020, the UK will leave the EU Single Market and Customs Union. This will mean new border and customs procedures apply, regardless of whether the UK and EU agree the ambitious free trade agreement that the government is seeking to negotiate.

 

“Our shared focus should be on mitigating any potential disruption to supply into the UK across all categories of medical supplies, including, but not limited to:

 

  • Medicines
  • Medical devices and clinical consumables
  • Clinical trials supplies
  • Products of human origin (blood and transplant items)
  • Vaccines and countermeasures
  • Non-clinical goods and services (NCGS) in support of health and social care providers

 

“We’re asking suppliers to put in place flexible mitigation and readiness plans in preparation for new border and customs procedures.”

 

Re-routing away from the short straits

 

“A large percentage of medical supplies come from the EU or have a supply touchpoint there. The first priority of any contingency should be to maintain replenishment rates at necessary levels by securing capacity to reroute freight away from the short straits potential disruption points. Companies are encouraged to review their own logistics arrangements and consider making plans for avoiding the short straits as a matter of priority.

 

Supporting ‘trader readiness’ for the new customs and border arrangements.

 

“As the UK leaves the EU single market and customs union, businesses will need to prepare for life outside both at the end of 2020, and many have already acted.

 

“The government has published the Border Operating Model and launched a targeted ‘trader readiness’ communication campaign throughout the remainder of 2020. DHSC will support and supplement these to help businesses prepare for the changes at the border that will happen at the end of the year.

 

“As part of this, we will seek information from suppliers to understand their general needs and help identify those who may need more support, for example, with controlled drugs and cold-chain logistics.”

 

Buffer stocks of medical supplies where possible.

 

“Holding additional stock in the UK provides a further buffer against some disruption and we believe, where it’s possible, it’s a valuable part of a robust contingency plan. To build upon past work and ensure a co-ordinated approach, we will be asking suppliers to confirm their contingency plans for the end of the TP, and in particular, the balance between stock-holding in the UK, re-routing away from the short straits and readiness for new customs and border arrangements.

 

“We recognise that global supply chains are under significant pressure, exacerbated by recent events with COVID-19. However, we encourage companies to make stockpiling a key part of contingency plans, and ask industry, where possible, to stockpile to a target level of six weeks’ total stock on UK soil.”

Centralised stock build.

 

“In the run-up to EU Exit, the department, working with NHS Supply Chain, built up a centralised stock build (CSB) of fast-moving medical devices and clinical consumables. Some of this stock remains and accounting for likely demand trends for the time of year, we plan to build these levels back up to a target level of 6 weeks’ total stock. It’s important to note that the devolved nations of the UK may, in addition, choose to build their own stockpiles.”

 

Warehousing.

 

“Previous EU Exit preparations by the government included securing dedicated warehouse capacity for suppliers of medicines to stockpile in the UK. However, during 2019, utilisation of this space was extremely low. Given that the government is continuing to advocate a multi-layered approach to contingency planning and the additional preparation time companies have had before the confirmed exit date, we do not propose to intervene in this market at this time. However, we will keep this under review.”

 

Regulatory flexibility.

 

“You have been clear and consistent on your asks around regulatory clarity from 1st January 2021. In negotiations with the EU, the government put forward a proposal that minimises trade barriers and bolsters the resilience of medicines supply chains. We have entered a new, intensified stage of the negotiations and are ready and willing to reach an agreement. We will communicate to you more detail in the coming weeks. At this stage, we want to reassure you that we fully understand your requests and are working hard across the government to ensure that the needs of the health and social care sector are met.”

 

Shortage management response.

 

“Suppliers should in the first instance raise any anticipated or actual supply disruption through business as usual routes. For suppliers of medicines, the department’s Medicine Supply Team has well-established procedures to deal with actual or potential medicine shortages and works closely with the Medicines and Healthcare products Regulatory Agency (MHRA), the pharmaceutical industry, NHS England and NHS Improvement, the Devolved Administrations and others operating in the supply chain to help prevent shortages and minimise the risks to patients.

 

“By way of reminder, medicines suppliers have a statutory duty to provide early notification of supply disruptions to the department and contact details for the Medicines Supply Team are at the end of this letter. All other suppliers should raise supply issues through usual routes or the National Supply Disruption Response.”

 

National Supply Disruption Response.

 

“The National Supply Disruption Response (NSDR) is the service for suppliers of all categories experiencing supply and logistics challenges. The NSDR is currently stood up in order to assist with the demands on supply across the workstreams as part of our response to COVID-19. Regardless of the COVID-19 situation, NSDR will be stood up for the end of the TP as a contingency measure. At present, supply issues not related to COVID-19 should be raised through business as usual routes.

 

“We will continue to ask health and social care service providers to avoid local stockpiling over and above business as usual ahead of 31 December as it is unnecessary and could cause shortages in other areas, which could put patient care at risk. Nor do patients need to stockpile medicines.”

 

Responding to the letter from the Government to medicines suppliers about Brexit and the end of the transition period on 31 December, including a request for manufacturers to stockpile six weeks’ of medicines, RPS President Sandra Gidley said:

 

“I’m concerned to see the prospect of a no-deal Brexit return once again, amid one of the most challenging times in the history of the NHS.

 

“It’s vital the UK and EU agree on a deal on medicines regulation as soon as possible, to support our world-leading life sciences sector and ensure patients can get the medicines they need.

 

“As we head into winter, combined with the potential of a second wave of COVID-19, the Government must consider all the options as part of prudent contingency planning to support patient care.

 

“This should include changes in medicines legislation to empower pharmacists in the community to use their professional judgment to make simple substitutions when a medicine is out of stock.

 

“The Health Secretary has called for an and to unnecessary bureaucracy and this is one change that would speed up patient access to appropriate treatment and reduce GP workload.

 

“We’re continuing to raise this with the Government alongside other key lessons from COVID-19.”

 

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Export of certain drugs banned ahead of Brexit

 

The UK Government is banning the export of certain key drugs to alleviate shortages and ‘protect UK patients’ weeks ahead of the 31st October Brexit deadline.

 

Most of the 24 medicines that wholesalers will not be able to sell outside of the UK from midnight tonight are hormone replacement therapies (HRT) used to treat menopause symptoms.

 

The list also includes EPiPens, anti-blood-clotting drugs and hepatitis B vaccines.

 

Pharmacists will also get special powers under a new provision to alter prescriptions of anti-depressant fluoxetine.

 

Ministers are writing to drugs wholesalers to warn the UK medicines regulator will take action to stop parallel exporting.

 

This is when wholesalers import medicines to the UK but sell them on elsewhere in the EU when prices in other markets rise – a practice that would become more attractive if the pound weakens.

 

Stocks of HRT and some other drugs have been disrupted in recent months because of manufacturing, supply and demand issues.

 

Dr Farah Jameel, who represents GPs through the British Medical Association, said this had gone on “far too long”.

 

“Drug supply issues are common, and while clinicians can prescribe alternative medication, amending a patient’s prescription takes time and this can significantly add to our already heavy workload – particularly if the issue is ongoing.

 

“More importantly, prescribing alternative interim medication might not always help to fully relieve a patient’s symptoms, further delaying their treatment and causing avoidable, unnecessary distress to the patient.

 

“The menopause can be a very difficult time for many women, so it’s essential that they have access to the medication they need when they need it.”

 

Yet restrictions on other drugs come as the chances of a no-deal Brexit rise.

 

While pharmaceutical companies are supposed to be building up reserves of key medicines, the public spending watchdog warned last month overall stocks are still ‘unknown’.

 

Scottish health secretary Jeane Freeman said plans to stockpile, warehouse and fast-track medicines are “not normal or sensible”.

 

UK health and social care secretary Matt Hancock said: “The new measures we’re introducing today will help us ensure patients get the medicines they need and the high-quality care they deserve.

 

“Helping the NHS is a priority for this government, and people should be fully reassured that we will always act to ensure that there is an adequate supply of the medicine you need.”

 

Dr Rick Greville, director of supply chain at the Association of the British Pharmaceutical Industry, welcomed the “precautionary measures”.

 

“It means that these stockpiles of medicines which companies have built over previous months are better protected and available for use only by the NHS patients for which they were intended.”

 

This story was supplied as part of our partnership with healthandcare.scot. 

 

RCGP urges Tory leader hopefuls to prevent no-deal Brexit

 

The Royal College of General Practitioners has written an open letter to the next leader of the Conservative Party – and next Prime Minister of the UK – calling on them to safeguard the NHS and avoid a ‘no deal’ Brexit in the best interests of patient care.

 

In the letter, which has been sent to all remaining candidates in the leadership race – Boris Johnson, Jeremy Hunt, Michael Gove, Sajid Javid, Dominic Raab and Rory Stewart – Professor Helen Stokes-Lampard, RCGP Chair has written:

 

“This is a transformational time for our country and the health service. General practice is the bedrock of our NHS. It is the first point of contact with the health service and is highly valued by patients.

 

“But it is also under immense strain. If we are to meet the challenges of the 21st century and put the NHS on a sustainable footing, it is essential that the next Government sets out a positive vision for the future of general practice and helps us realise the ambitions set out in NHS England’s Long-Term Plan.”

 

As well as calling for assurances that the NHS will remain free at the point of use now and for future generations, Professor Stokes-Lampard also calls on whoever is the next Prime Minister to:

 

  • Increase funding for frontline general practice to at least 11% of the NHS budget, and deliver NHS England’s Long-Term Plan in full
  • Recruit at least 5,000 additional GPs by 2021 in addition to more members of the wider practice team to work on the frontline of general practice and
  • Ensure that general practice is an attractive career to prevent experienced GPs leaving the profession.

 

These are all key to delivering the College’s vision for general practice, Fit for the Future, launched last month – the result of a consultation with more than 3,000 GPs, other healthcare professionals and patients.

 

Lastly, the College is urging all candidates to prevent a no-deal Brexit at any cost given the significant impact on patient care it could have by threatening the supply of medicines, medical devices and radioisotopes, and the recruitment and retention of vital EU national staff.

 

The College officially opposes the UK’s exit from the European Union following a decision by its governing Council in November 2018.

 

Commenting on why she wrote the letter, Professor Stokes-Lampard said:

 

“We need to know that regardless of who wins this contest, our health service will remain safe and free at the point of need for our patients – one of the foundations that this great source of national pride was built on.

 

“Brexit has dominated the political landscape for several years, to the detriment of health, education and many other essential pillars of our society. As a College we oppose Brexit on the grounds that we believe it will have a profoundly negative impact on the NHS and patient safety – but if we are to leave the EU, at the very least we need assurances that we will not do so without a no deal.

 

“As the UK’s largest Medical Royal College, representing more than 53,000 doctors, it is not our place to say who will make the best Prime Minister, but whoever it is must make the NHS a priority; they must protect it, and the best way for them to do this will be to invest in general practice.

 

“Our vision is that GPs will have more time to care for their patients – the standard consultation will be at least 15 minutes – and that being a GP is the best job in the world, but this future is only achievable if we equip general practice with the resources, infrastructure and skills that it needs.”

 

This story was supplied as part of our partnership with healthandcare.scot. 

Half of Scottish integrated joint boards without emergency Brexit cash

 

There is a nationwide deficit of £75m as savings targets have been missed across Scotland. Just under half of the public bodies leading health and social care integration in Scotland have no emergency cash set aside, despite fears Brexit – set to take place in October – could cause a spike in medicines prices.

 

Scotland’s 31 integration authorities also faced a cumulative deficit of almost £75m in the last financial year because they missed challenging savings targets, requiring bailouts from the NHS, local authorities and the Scottish Government.

 

The Scottish Government says it is investing an additional £700m in this financial year. Compiled by chief finance officers, the figures were presented to the Scottish Government in December. A summary was then published by North Lanarkshire health & social partnership.

 

There are 30 health and social care partnerships across Scotland, while Highland operates under a different model. As integration authorities, all are responsible for bringing together community health and social care services.

 

In December, 22 authorities said they would be in deficit at the end of the financial year, one predicted it would break even and eight said they would come in under budget. Authorities overspent their budgets by £97m – with nearly two-thirds of this coming from savings targets that could not be achieved.

 

Other pressures included more people needing care, the cost of higher wages and increases in prescription spending. This deficit was offset somewhat by £23m that was saved by not filling staff vacancies, leaving a net overspend of £74.4m. This gap is to be met with bailouts from the NHS and local authorities, or, in one case, the Scottish Government.

 

The total amount of cash held in reserve by integration authorities also fell by a quarter, from £125m to £93m. 11 authorities reported having no reserves at all, while a further four have no emergency savings but have some money set aside for specific projects.

 

North Lanarkshire and Aberdeen are two of the authorities that have warned the UK’s departure from the EU, which is set to happen in October 2019, could increase prescribing costs.

 

A Scottish Government spokesperson said: “North Lanarkshire HSCP’s financial position at 31st March 2019 was a net underspend of £2.968m.

 

“Integration Authorities have real power to drive change, managing over £9bn of resources that NHS Boards and local authorities previously managed separately. Pooling budgets in this way gives local systems greater opportunities to maximise the use of all of their resources to improve people’s health and wellbeing.

 

“We continue to invest in social care and integration, and this year our package of investment to support these services will exceed £700m, a 29% increase over last year.”

 

This story was supplied as part of our partnership with healthandcare.scot. 

Seema Kennedy appointed as pharmacy minister

Seema Kennedy MP

 

Seema Kennedy MP was appointed as a Parliamentary Under Secretary of State at the Department of Health and Social Care this week. As part of her new brief Ms Kennedy now has responsibility for pharmacy.

 

This appointment comes after the recent resignation of the previous minister with responsibility for pharmacy Steve Brine MP.

 

Ms Kennedy was born and grew up in and around Blackburn. After a time working in London as a solicitor, she joined the family business which owns commercial properties in Preston.

 

She has been the MP for South Ribble since 2015 and has campaigned for better local infrastructure and small businesses. From 2015, Seema became co-chair of a cross-party Loneliness Commission along with Jo Cox MP. Following Jo’s murder in 2016, this work was taken forward by Seema and her new co-chair Rachel Reeves MP to form the Jo Cox Loneliness Commission.

 

In 2017, she became the Parliamentary Private Secretary (PPS) to the Prime Minister. She is the first female PPS to a Conservative Prime Minister.

 

PSNC Chief Executive Simon Dukes said:

 

“PSNC would like to congratulate the new Minister on her role; we look forward to meeting her at the earliest opportunity and to building on the collaborative working relationship we have established with the Department. We will ensure that Ms Kennedy is briefed on the value of community pharmacy and we hope to work with her to ensure that the full potential of community pharmacies is realised.”

 

Commenting on the appointment, Chair of the RPS English Pharmacy Board Sandra Gidley said:

 

“We look forward to meeting the new minister and continuing to engage constructively with the Government on how pharmacists’ expertise will be central to achieving the ambitions of the NHS Long-Term Plan. The public deserves to benefit from making better use of pharmacists’ skills.

 

“I hope the minister will build on her predecessor’s commitment to the health and wellbeing of pharmacy staff, as we ask them to play an increased role in supporting the nation’s health.”