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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

Magistrates uphold council decision not to renew dog-breeding licence

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ON MONDAY 18 November 2019, Rhydian Jones of Waun Lluest, Gorrig, Llandysul appeared before Aberystwyth Magistrates at an appeal hearing objecting to the decision not to renew his Dog Breeding Licence.

Ceredigion County Council took the decision under the Animal Welfare (Breeding of Dogs) (Wales) Regulations 2014, because of breaches in licence conditions identified during unannounced inspections of the premises. The breaches included the lack of supervision, enrichment and socialisation given to the dogs. Breaches also included the unsatisfactory cleaning of premises and the absence of dog breeding records. There was also a failure to make improvements requested of Mr Jones previously.

Health and Welfare Reports provided during the hearing detailed health problems with the dogs which included lice and mange.

Mr Jones disputed the findings and decision of the council throughout the appeal hearing. His defence referred to the considerable amount of improvements that had been completed.

The court concluded that the council had provided full and clear grounds for not renewing the Dog Breeding Licence, stating that the council was both reasonable and proportionate in their actions. The court accepted that the establishment was unsatisfactory in many respects whilst acknowledging that significant improvements had been made. It took into consideration the history of non-compliance at Waun Lluest, the testimony given by the appellant and the lack of confidence in him as a licensee. The court concluded that the recent improvements made by Mr Jones were unlikely to be sustained and found in favour of the council. The appeal was dismissed. Mr Jones was ordered to pay £500 costs.

Alun Williams is the council’s Corporate Lead Officer responsible for Policy and Performance. He said, “We are delighted that Magistrates found in our favour. A decision not to renew a licence is not taken lightly and officers and council solicitors had to build a robust case to present to the court. We will continue to make unannounced inspection visits to all licensed dog breeders in the county, the great majority of which operate well within regulations and the conditions of their licence. We will also pursue those individuals who breed dogs without a licence. Anyone with information on such activities should contact the council on 01545 570 881.”

Mr Jones previously held a licence to breed 26 adult dogs. His establishment had recently featured in a BBC Wales investigative documentary, although the council had decided not to renew the licence many months before broadcast.

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Community

A Battered Suitcase in the Attic: Explore Your Own Archive

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CEREDIGION’S Explore Your Own Archives’ campaign, ‘A Battered Suitcase in the Attic’, will be held from 25 to 30 November 2019. The intention is to get people to value their own personal archives. The title reflects the half-forgotten treasures that many people have hidden in the attic or under the bed in their homes.

Explore Your Archive is a national campaign delivered by the Archives and Records Association which aims to showcase the best of archives and archive services to a wide range of existing and potential users.

The local campaign wants to make people in the county consider and start to really value the documents that they’ve stashed away, and look after them.

During the week, various events and activities will take place at Aberystwyth Bandstand. The Bandstand will be open from 10am until 5pm Monday until Friday. Events and activities during the week are free for all, and some can be seen below.

· Displays of beautiful and interesting things from the Ceredigion Archives collections.

· A display of some special collections curated by Aberystwyth University Postgraduates studying Archive Administration.

· A chance to get your own free archive box for your family’s document treasures.

· A ‘Victorian’ photo-booth – dress up in the clothes (kindly loaned by Ceredigion Museum) and strike a suitable pose in front of our specially painted backdrop.

· Badge-making for all ages.

· Comfy corner: relax and watch a slide show of images from our collections, share your recollections with us.

· Browse a selection of Ceredigion Archives books, greetings cards and preservation items for sale at modest prices.

· Refreshments.

There are also lectures, workshops for adults and children and an evening with local ballad singer Owen Shiers. All events are free but so you’ll need to book for the workshops and Owen Shiers’ performance on Thursday night as numbers are limited.

Visit http://bit.ly/ArchifdyCeredigionArchives to book your place on workshops or Owen Shiers’ performance, or you can call Ceredigion Archives on 01970 633697 between 10-5 on Monday until Friday. Also, on the website you can see a full list of day to day activities and events taking place during the week.

If you need further information, call Ceredigion Archives on 01970 633697.

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Community

Three New Quay RNLI crew members pass out as lifeboat mechanics

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THREE volunteer crew members have recently qualified as volunteer all-weather lifeboat mechanics at New Quay Lifeboat Station.

After a long training programme, which included courses at the RNLI College in Poole and extensive training on station, Pete Yates and Huw Williams were put through their paces by Peter McColl, RNLI Senior Assessor Trainer, Plant and Machinery, in their final pass out assessment 31 October.

After demanding assessments, where they had to deal with a variety of emergency situations at sea, Pete and Huw demonstrated the required level of competence to become lifeboat mechanics.

Pete said: ‘It was a very intense assessment, having to constantly think on your feet and remember your training.’

On 20 November, RNLI Assessor Trainer Simon Bunting visited the station and made it a hat trick of mechanic pass outs as crew member Dylan Price successfully completed a series of assessments, both onshore and afloat.

Huw added: ‘Pete, Dylan and I would like to thank the crew who gave up their time to launch the boat for our assessments and also thank our mechanics who have helped so much with training. We couldn’t have done it without their support.’

Roger Couch, New Quay RNLI Lifeboat Operations Manager said: ‘As part of our ongoing succession planning, Pete, Huw and Dylan have trained hard over the past year and I’d like to thank them for their time and effort. It is essential that we have a mechanic available at all times and this gives us much more flexibility to cover weekends and holidays for our full time station mechanic.’

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