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One family’s cancer quest

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A WEST WALES family has been offered new hope that a mum will be able to access potentially life-saving treatment.

BIRTH THEN BAD NEWS

The birth of your first child is an experience beyond compare and a moment that changes your life forever.

In Anca Falconer’s case, a matter of days after giving birth she was met with the news that she had a very rare and potentially incurable cancer.

Shock and disbelief was shortly replaced with major surgery which was in itself life-changing.

After a long recovery process, Anca was given the news that the tumour had been successfully removed but the likelihood of a return of the cancer was high within a two year period.

Life became a backward ticking clock, counting down the time and eroding any opportunity for optimism.

Two years later she was diagnosed with secondary liver cancer with a high probability of it spreading to the lungs.

The standard treatment is chemotherapy and Anca endured rounds of the gruelling treatment and kept up her fight against the disease. The disease has not spread, but nor has she been cured.

SIRT OFFERS HOPE

But there was hope, a treatment called Selective Internal Radiation Therapy (SIRT) is available.

The only problem is that it is not available in Wales and for Welsh patients to receive it they have to apply for funding through the Welsh Health Specialised Services Committee (WHSSC).

An application was made and refused.

And there things become more than a little unclear.

Anca’s husband, local businessman Richard, kept up the pressure on getting Anca the treatment that offers hope to the family, as opposed to rounds of ineffective – and mostly palliative – chemotherapy.

AN UNFORTUNATE LETTER

In desperation, Richard Falconer wrote to Professor John Wagstaff, who is a Director of the Welsh Cancer Care Centre and a Consultant Oncologist employed by Abertawe Bro Morgannwg University Health Board (ABM-UHB).

Herald readers in Pembrokeshire will have come across Professor Wagstaff before. It was his correspondence we featured in our story which revealed that, as far as the Professor was concerned, maintaining cancer treatment west of Swansea was not viable.

And Professor Wagstaff’s letter-writing skills have once again attracted our attention.

We were contacted by eagle-eyed health campaigner Lyn Neville, who drew our reporter’s attention to the content of a post Richard Falconer had made about his most recent communication from Professor Wagstaff.

That letter concluded: “My view is that a further application to WHSSC will be futile. I am therefore not prepared to spend time filling out all the forms necessary to make an application. I think that your only course here is to fund it yourself.”

We will return to that conclusion’s unfortunate tone later on.

CROWD FUNDING HELP

Bereft, Richard set up a Just Giving page to try and raise the funds for treatment and, thanks to public generosity, was able to fund a first round of treatment.

The Herald spoke with Richard Falconer: “I was horrified by the letter. It is not his call to make. It is for WHSSC to decide and not for him to prevent applications. WHSSC themselves have stated an application should have been submitted.

“In fact, I have discovered that applications we were told by WHSSC that they had no record of more than one application being made and subsequently re-submitted. That means the information that WHSSC would have is four years old.

“The whole situation has changed in 4 years. The fact that Anca has lasted for this period is beyond their expectations. The fact that the cancer has not appeared outside of the Liver is the key reason for this treatment and also for a repeat application.

“To allude to lack of evidence and ignore clinical advice, poisoning Anca’s whole body with systemic chemotherapy whilst targeted treatments and methods are available is beyond belief.

“It is my firm belief Prof Wagstaff is not only not qualified to deal with such a disease – some two years ago he misdiagnosed her as having cervical cancer because he had not read her notes – but has not got the basic human qualities necessary to deal with patients.”

QUESTIONS ASKED

Struck by his plight we contacted WHSSC, Hywel Dda UHB, the Welsh Government, ABM-UHB, and local AMs.

We asked ABM-UHB to comment on the letter’s content and tone. A spokesperson told us: ‘Because of patient confidentiality we cannot comment on the specifics of this case.

‘In Wales, funding applications for specialist treatment are made to the Welsh Health Specialised Services Committee (WHSSC).

‘The treatments offered by Professor Wagstaff and the South West Wales Cancer centre are in line with national and international guidelines.

‘We apologise for the unfortunate tone of the letter, which was clearly not appropriate given the very difficult circumstances’.

A Welsh Government spokesperson said: “The responsibility for providing the most effective care and treatment for individuals lies with their Health Board.

“The clinical effectiveness of SIRT for the treatment of liver cancer has not been established, which is why it is not currently routinely available in England or Wales. A limited number of patients in NHS England are receiving the treatment as part of a commissioning through evaluation programme in order to provide a better picture of its effectiveness. NHS Wales will make a decision regarding the routine commissioning of SIRT when the results of the evaluation become available.”

And there was cold comfort from WHSSC.

Dr Sian Lewis, Medical Director for the Welsh Health Specialised Services Committee, said: “The Welsh Health Specialised Services Committee is unable to comment on individual patient cases or the outcome of individual patient funding requests for specialist treatment.

“We care greatly about commissioning the best care for the people of Wales and our commitment is to the provision of treatments that deliver the best evidenced outcomes, cost effectively, so that treatment can be made available fairly to all patients.

“The clinical effectiveness of SIRT for the treatment of liver cancer has not currently been established and therefore it is only available to a limited number of patients in NHS England as part of their commissioning through evaluation programme. The programme is supported by the National Institute for Health and Care Excellence (NICE) who provide information on the number of patients needed to support data analysis, and various follow up measures.

“The NHS England position around previous commissioning through evaluation programmes is that once the number of patients have been recruited to the programme access to the intervention stops until the results of the evaluation become available. A decision will then be made as to whether the treatment will become available. It is anticipated they will publish their final commissioning advice for SIRT by April 2018.

“NHS Wales will make a decision regarding the routine commissioning of SIRT when the results of this evaluation become available and there is evidence or otherwise to support the benefit to patients.”

AM TAKES AN INTEREST

Mid and West AM Simon Thomas commented: “Selective internal radiation therapy is a way of giving radiotherapy treatment for cancer in the liver. Currently it is not being routinely funded under the NHS in England, Wales, Scotland, or Northern Ireland. However, a patient could potentially seek treatment through the Individual Patient Funding Request process. My heart goes out to this family put in an impossible situation. The application for funding may have been submitted under the current arrangements, rather than through the new criteria. I will write to the local health board and the Cabinet Secretary for Health and Well-being to ask whether they will review this case.”

Plaid Cymru secured a review of the system of Individual Patient Funding Requests last year and the review panel reported back in January.

Plaid Cymru Shadow Cabinet Secretary for Health and Social Care Rhun ap Iorwerth told us: “The review was significant. The current system was a postcode lottery and made hundreds of seriously ill patients have to overcome bureaucratic hurdles before they could access treatment. That’s why Plaid Cymru long campaigned for a better system, which ends the exceptionality clause – the need for a patient to prove their need is exceptional – and ensures consistent and fair decisions.”

Simon Thomas explained: “Two recommendations from the review are particularly relevant to this case:

“Each health board area should have its own Individual Patient Funding Request panel, as opposed to establishing a single national panel.

“Previously, decisions on IPFRs have been based on a clinician’s ability to demonstrate ‘clinical exceptionality’ in the case of their patient. This was a particular focus of the review in Wales, which concluded that the exceptionality criteria was poorly understood and should be replaced.

“The review also found that the ‘exceptionality’ principle is not well understood and has been applied in circumstances where it does not make sense. The review recommended replacing it. Whether a patient is given an intervention should depend on whether the patient will gain significant clinical benefit from the intervention, and whether the intervention offers reasonable value for money.

“The Labour Government said in March it had already started to reform the decision-making criteria, and that this should be achieved by May 2017. The rest of the recommendations are expected to be implemented by September 2017.”

NEW HOPE

After we received the responses above, we were contacted by Richard Falconer.

Richard told The Herald: “After you spoke with me earlier today (Tuesday, Jun 13), Steve Moore Chief Executive of Hywel Dda University Health Board has been in touch.

“Mr Moore’s response was both sympathetic and assured us that there would be no barriers now for us to get a referral into NHS England’s Cancer Specialist Clinicians.

“An application for this referral is being worked on and we hope to be solely in the hands of the clinician that has prescribed the SIRTEX treatment.

“Hywel Dda have confirmed that the Hammersmith Hospital is an approved referral centre so the process should be a relative formality. This will allow us to have continuity in treatment and access to the centre of excellence of both Hammersmith and the Royal Marsden where Anca received treatment prior to moving to Wales.

“I have also spoken today extensively with WHSSC and have a meeting with Carole Bell the WHSSC Director of Nursing set for next Thursday. Carole is travelling to my home to facilitate this meeting. This again is I feel a positive action and step as it will allow me to introduce our particular circumstances for further consideration.

“I personally feel that, whilst it has taken many years, our situation as a family having now reached the attention of the upper echelons of Hywel Dda management and executives has finally got an understanding and sympathetic ear with promises of dutiful referral and support.

“I can say a few tears of happiness were shed by both Anca and myself. It’s been a long hard road.”

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Community

Lampeter to have its say on £10,000 funding for community groups

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Community groups in Lampeter will soon have the chance to apply for funds from a pot of £10,000
committed by Dyfed-Powys Police Police and Crime Commissioner Dafydd Llywelyn.
The commissioner has called on groups to take advantage of funding for projects that aim to
improve safety in the area.

Mr Llywelyn has committed £140,000 for Neighbourhood Policing Teams to spend within the
communities they serve. Each team will receive £10,000, with communities themselves voting on
how the money is allocated.

Lampeter is next on the list of events – and the NPT is calling on partner organisations and people
who live or work in the town to join forces and form a community planning group to make key
decisions.

Mr Llywelyn said: “I have committed to fund this new and innovative approach to community
funding as I think it’s vital that local residents have a say in how money is spent in their local area.
“They are best placed to work with the police, and indeed other partner agencies, to identify where
the money is needed and what would most benefit the local communities.
“Communities should be influencing the decisions.

“I urge the various community groups in Lampeter to consider the funding that I have made
available, and to contact the Lampeter NPT to discuss ideas, so the whole community can work
together to improve community safety.”

The planning group will attend several meetings – either socially distanced or online – over the next
few months to agree on key decisions and planning. Details will then be released on how groups can
apply for the funding, and an event will take place, giving people a chance to vote on which projects
should benefit.

Superintendent Ifan Charles, force lead on participatory budgeting, said: “Participatory budgeting is
a way of giving communities a greater say in how their community evolves.

“Problem solving to find long term solutions to solve the issues that cause communities the greatest
harm, is at the core of our new neighbourhood policing model.

“Through informed community engagement and problem solving, the new neighbourhood structure
should reduce the long-term harm for our communities and with that, demand on our response
officers, but this will only work if our communities and partners are equally engaged.
“Participatory budgeting has worked really well elsewhere and I’m really excited to lead the
introduction of this innovative approach here.”

If you live, work or play in Lampeter and would like to be involved, or if you have any questions,
please register an interest at LampeterPB@dyfed-powys.pnn.police.uk
Follow the NPT on Twitter at @LampeterPolice for further updates. #LampeterPB

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Community

Ceredigion lifesavers go the extra mile during lockdown

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Loyal blood donors in Ceredigion have responded to a request from the Welsh
Blood Service to ‘donate differently’ by rolling up their sleeves to make a
lifesaving donation at one of the Service’s new regional hubs.

Across Wales, of the 6,808 individuals that visited a Welsh Blood Service donation
session in May 63% of donors attended a clinic that was not their usual donation
venue.

In Ceredigion, 293 donors came forward to give blood in May, with 34 attending a
donation session for the very first time.

Following a series of Covid-19 related venue cancellations and social distancing
restrictions, the Welsh Blood Service was unable to host donation sessions at the thirty
community venues it would typically visit across Wales each week.

The Service introduced a new collections schedule at the beginning of April which saw
collections taken from five regional donation hubs at different locations in Wales each
week. Donors were asked to travel to donate at their nearest hub.

Alan Prosser, Director of the Welsh Blood Service, said: “When it became clear we
couldn’t continue with business as usual, we knew we’d have to ask donors to donate
differently. Our regional donation hubs have replaced our usual local collections
programme and the response from donors has been remarkable.

“98.3% of the appointments we’ve made available since lockdown have been taken
and many of these appointments have been taken by donors who have been prepared
to go even further out of their way than they usually would just to make a potentially
lifesaving donation.”

The Service has also observed a sharp rise in the number of new donors coming
forward to donate.

Mr Prosser continued: “In May 2019, around 11% of those that attended our donation
sessions were new donors. This May, around 19% of our attendance has been people
who had never given before.

“We’ve also see a surge in the number of donors who haven’t given in years returning
to our sessions to help us boost stocks. It’s been amazing and we’re hugely grateful.”

Blood stocks in Wales have remained healthy throughout the pandemic as the reduced
collections activity has mirrored a reduction in the volume of blood used by hospitals.
However, the Service is urging donors to continue to attend their local sessions as and
when lockdown restrictions are lifted.

“Blood stocks are currently very healthy thanks to the commitment of new and existing
donors but we need people to keep giving blood to ensure we can continue to meet
hospital demand in the coming months. Travel to donate is considered essential travel
and anyone who is fit, well and eligible to donate can book an appointment through the
welshblood.org.uk website.”

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Community

Porth Cymorth Cynnar supporting residents in Ceredigion

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During this challenging period, Porth Cymorth Cynnar has established a virtual platform to ensure that we are able to keep in touch with vulnerable residents across Ceredigion.

Due to the restrictions introduced to safeguard our communities against COVID-19, many residents are not able to access their usual provision or support such as parent groups or GP Referral Exercise Classes. Instead, we are ensuring that all residents whom are known to our services, and others, are kept in touch with, through regular welfare calls, should they wish.

Around 2000 residents from young people to families to carers, who may require or benefit from regular contact whilst their service is not operating in its usual form, will receive communication from our staff.

To date, almost 2000 welfare calls have been made, and have been well received by people across Ceredigion. Residents have said that it is great that someone is keeping in touch with them, to give them an opportunity to have a weekly phone call and someone to talk to.

Mrs Jones* (name changed for anonymity) who is 92 and lives alone, is used to receiving regular visits from Ceredigion’s mobile library was identified as benefiting from a weekly phone call, to check how she was doing, now that her usual library service would not be visiting for a while. Porth Cymorth Cynnar aimed to get in touch with Mrs Jones, but did not have a contact number. After tracking down a contact number through the local directory, a member of the Porth y Gymuned team was able to make contact. Luckily Mrs Jones has the support of family and neighbours to collect groceries, but nonetheless was extremely grateful to have someone to talk to, and to check that she is OK. A weekly phone check in has been organised with Mrs Jones, to ensure that she is doing well and to organise if she is in need of anything.

If you, or anyone you know would benefit from the Keeping in Touch Service, please get in touch with our Customer Services team on 01545 570881 or clic@ceredigion.gov.uk who will triage your query to Porth Cymorth Cynnar.

Porth Cymorth Cynnar are also regularly updating resource lists which are available on the Ceredigion County Council website here: http://www.ceredigion.gov.uk/coronavirus

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