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Better pregnancy or baby loss bereavement care for people in Wales

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SANDS the UK’s leading pregnancy and baby loss charity, is supporting the National Strategic Clinical Network for Maternity and Neonatal Services to create tailored bereavement care pathways for those who have experienced pregnancy or baby loss in Wales.  

The pathways aim to reduce inequalities and improve the quality of bereavement care provided to parents and families, and has been made possible by funding from the Welsh Government. The pathway materials will include guidance for healthcare professionals based on evidenced best-practice, and a set of standards relating to important aspects of bereavement care.

Good quality bereavement care is vital for parents who have experienced the loss of a pregnancy, or whose baby has died. It includes sensitive communication with parents, providing a bereavement room away from maternity or labour wards, and parents being given informed choices about decisions relating to their care and the care of their babies.
 Clea Harmer, Sands’ Chief Executive, said: “Everyone affected by pregnancy loss or the death of a baby deserves high quality bereavement care and support. 

“We know that no level of care can remove the grief that many parents will feel after pregnancy loss or the death of a baby, but good care can make this devastating experience feel more manageable. We also know that poor quality or insensitively delivered care can compound and exacerbate pain.

“This launch follows a huge amount of hard work and determination from our partner organisations, the generous support of many bereaved parents and families, and medical professionals who have shared their experiences.

“We hope that through supporting the National Strategic Clinical Network for Maternity and Neonatal Services, we can work together to make sure everyone affected by pregnancy or baby loss gets the care that they need.”

In developing the pathways for Wales, Sands carried out a series of listening events for parents and health professionals during 2024, to understand how bereavement care in Wales can be improved. 

These insights will be incorporated into work with the National Strategic Clinical Network for Maternity and Neonatal Services to introduce pathways to address specific needs after miscarriage, Termination of Pregnancy for Foetal Anomaly (TOPFA), stillbirth, neonatal death or Sudden Unexpected Death in Infancy (SUDI).

Chief Midwifery Officer for Wales, Karen Jewell said: “We are delighted that we have been able to support this important initiative to develop and implement a National Bereavement Care Pathway for Pregnancy and Baby Loss.

“Pregnancy loss or the death of a baby is devastating, and this initiative will help to ensure that every family who suffer from this are appropriately and compassionately supported.

“Our significant investment into bereavement services will improve care and ensure consistency across Wales, the Bereavement Support Grant will continue to support organisations like Sands to extend and deepen bereavement support and fill the gaps that currently exist.”

Healthcare professionals are an important part of the Sands community, and the charity wants to support them to deliver good bereavement care. The pathways will introduce dedicated support for medical staff who care for bereaved families in Wales.

Cara Moore, Lead Midwife from the National Strategic Clinical Network for Maternity and Neonatal Services said: “We are thrilled to be leading the development and implementation of the development and implementation of bereavement care pathways in Wales in collaboration with Sands. The development of pathways will ensure consistent high quality and sensitive bereavement care is offered to all bereaved parents in Wales. This will be supported through training, interdisciplinary collaboration and continuous monitoring and promises a sustained improvement in the experiences of bereaved parents.

“We are also pleased that the implementation of the pathways align with and supports long term plans for the delivery of high quality maternity and neonatal care in Wales.”

Marc Harder, Head of Bereavement Care & Hospital Liaison at Sands, said: “Earlier this year, bereaved parents and families in Wales generously shared their stories of pregnancy and baby loss with us during a series of listening events. Key themes that arose included gaps in compassionate care, inappropriate and insensitive medical terminology, care outside of the hospital and inconsistency in bereavement care provision.

“We are delighted to be working in partnership with the National Strategic Clinical Network for Maternity and Neonatal Services to develop bereavement care pathways that will begin to address these concerns and lead to higher quality care at such a difficult time for parents and families. We will continue to work with parents, professionals and other stakeholders to ensure an evidence-based and community-led approach to the development of Wales-specific pathways.”

More information about the bereavement care pathways in Wales
The project in Wales is led by Sands in collaboration with a number of other charities and professional organisations, and funded by the Welsh Government. The project provides dedicated, evidence-based care pathways designed for all healthcare professionals and staff involved in the care of women, birthing people, partners and families at all stages of pregnancy and baby loss.

Five experiences of pregnancy or baby loss are included in the pathway project including miscarriage, TOPFA, stillbirth, neonatal death and SUDI.

Sands is here to support all bereaved families in Wales and across the UK. The charity provides support through its Freephone helpline, online community and resources, and through a network of regional support groups run by trained befrienders, all offering in-person peer support. 
 Find out more about all the ways the charity offers bereavement support.  

Health

NHS Wales accused of failing over 300,000 patients with hearing loss

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RNID report claims ‘systemic discrimination’ is putting lives at risk

A NEW report published this week (April 24) has accused NHS Wales of widespread failings in care for deaf people and those with hearing loss—failings that campaigners say are not only unlawful, but also putting lives at risk.

The report, titled Still Ignored: The Fight for Accessible Healthcare, was compiled by RNID, a leading charity supporting people who are deaf, have hearing loss or tinnitus. It highlights what the organisation describes as a “hidden scandal” affecting more than 300,000 adults across Wales.

Despite clear legal duties under the Equality Act 2010 and a decade-old policy framework—the All Wales Standards for Accessible Communication introduced in 2013—the report finds that deaf people are routinely denied the support they need when accessing NHS services.

Missed standards, missed care

Among the most alarming findings is that more than 7 in 10 (73%) deaf patients and those with hearing loss say they have never been asked about their communication needs in a healthcare setting. This is despite it being a basic requirement under equality law.

Almost 1 in 3 (30%) reported being unable to contact their GP in a way that works for them, such as using text or email instead of a phone. More than 2 in 3 (64%) had difficulty knowing when they were being called from a waiting room, and 42% struggled to communicate symptoms or concerns with staff.

In more serious consequences:

  • 8% said they had avoided calling an ambulance or attending A&E due to communication barriers.
  • 18% said a health condition worsened because of poor communication.
  • 11% believe their health was directly put at risk.

Family as interpreters

More than half of deaf patients (56%) said they had to rely on family or friends to relay medical information, often without professional support. 1 in 4 were denied the communication assistance they asked for outright. RNID warns this not only risks miscommunication, but also strips patients of their right to dignity, privacy, and autonomy in healthcare.

The consequences can be devastating. Kate Boddy, a Child of a Deaf Adult (CODA) from Wales, acted as interpreter for her father, Richard Boddy, when he was diagnosed with cancer in 2022.

She told The Herald: “There’s so little out there in BSL. When Dad got his diagnosis, I had to suppress all my emotions just to translate for him. Even though we knew he was going to pass away, I don’t feel like I ever got to say goodbye.”

Mr Boddy died in November 2023, aged 70.

Staff awareness low

The RNID also surveyed NHS Wales staff and found significant gaps in training and understanding:

  • Only 57% knew how to record a patient’s communication needs.
  • Fewer than half (48%) knew how to flag those needs in online records.
  • Just 17% of staff said they always feel able to meet the communication needs of deaf patients.

Dr Natasha Wilcock, a deaf doctor working in palliative care, said: “Deaf insight training should be compulsory. I’ve met patients who didn’t realise their cancer treatment had ended and that they were receiving end-of-life care. That level of misunderstanding is unacceptable.”

Calls for urgent action

Polly Winn, RNID’s External Affairs Manager in Wales, said: “It is not acceptable for people to leave medical appointments without understanding their diagnosis, or to be forced to share intimate health details with family because NHS Wales won’t provide interpreters.

“This is systematic discrimination—an equality failure that is putting lives at risk. The situation demands urgent reform.”

RNID is calling on the Welsh Government to:

  • Reaffirm and enforce the All Wales Standards for Accessible Communication;
  • Introduce robust oversight systems to monitor compliance;
  • Mandate deaf awareness training for all NHS staff;
  • Ensure people with lived experience help shape future reforms.

A spokesperson for NHS Wales said the organisation is reviewing the findings and remains committed to improving access for all patients.

The Welsh Government has not yet issued a response to the report.

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Health

Charitable donations fund ECG machines worth £14,000 for Withybush Hospital

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THANKS to generous donations, Hywel Dda Health Charities – the official charity of Hywel Dda University Health Board – has purchased two new Electrocardiogram (ECG) machines worth over £14,000 for the Emergency Department at Withybush Hospital.

Chest pain is a very common presentation at the Emergency Department which sees between 100 and 130 patients a day. ECG machines provide key information on a patient’s heart by measuring rhythm and electrical activity.

The additional ECG machines will help ensure that patients presenting with chest pain receive an assessment as quickly as possible.

Senior Nurse Manager Josephine Dyer said: “We are so grateful that generous donations from our local community have enabled us to purchase the two ECG machines for the Emergency Department.

“High numbers of patients present with chest pain and require an ECG, so we hope that having the additional machines will reduce waiting times and offer an improved patient experience.”

Nicola Llewelyn, Head of Hywel Dda Health Charities, said: “We are deeply thankful for the generous support from our local communities which allows us to offer services beyond what the NHS can provide in the three counties of Hywel Dda. Every donation we receive is greatly appreciated!”

For more details about the charity and how you can help support local NHS patients and staff, go to www.hywelddahealthcharities.org.uk

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Health

UK fertility rates falling: Welsh counties among worst-hit, new data shows

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Two-thirds predict family sizes will shrink even further by 2040

NEW figures released by Fertility Family reveal that parts of Wales have seen some of the steepest declines in fertility rates across the UK, with the Isle of Anglesey recording a drop of more than 44% over the past 15 years.

The Beyond the Birth Rate report combines official birth statistics with survey data to explore why fewer people are choosing to have children – and why they’re waiting longer when they do.

Wales’ top ten fertility declines

The study identified the ten Welsh areas most affected by declining birth rates. The Isle of Anglesey tops the list with a fall of 44.21%, followed by Wrexham, Caerphilly and Merthyr Tydfil – all of which have seen declines of more than 27%.

RankAreaFertility rate decline
1Isle of Anglesey-44.21%
2Wrexham-31.01%
3Caerphilly-27.74%
4Merthyr Tydfil-27.53%
5Powys-26.17%
6Conwy-25.45%
7Pembrokeshire-24.46%
8Denbighshire-24.35%
9Cardiff-23.54%
10Blaenau Gwent-23.18%

Newport recorded the smallest decline in Wales, with a drop of just 8.6%.

How does the rest of the UK compare?

London has mirrored Wales’ dramatic decline, with boroughs such as Southwark also showing a 44.21% drop in fertility rates. However, some parts of England have been less affected.

Colchester has seen the smallest national drop, at just -3.95%, while other areas such as Runnymede (-5.19%), Lancaster (-6.04%), and Gravesham (-7.07%) have remained relatively stable.

Financial pressure tops list of reasons

The report suggests that the primary driver behind shrinking family sizes is economic hardship.

  • 40% of people said financial stability was the key reason for delaying children.
  • 23% described starting a family as simply unaffordable.
  • 60% of respondents believe this financial strain is a major factor behind the rising age of first-time mothers.

Why are people waiting longer?

In addition to economic challenges, lifestyle and societal shifts are also playing a major role:

  • 47% cited career ambitions and workplace pressures.
  • 44% blamed difficulties in finding the right partner.
  • 34% pointed to the housing crisis and lack of affordable homes.

These factors are leading to more people having children later in life – a decision which often reduces fertility and the total number of children they may have.

Smaller families likely the future

Over the past 15 years, the UK’s overall fertility rate has declined by 26.9%. That means for every two women of childbearing age, one fewer child is being born.

Looking ahead, 67% of people surveyed expect family sizes to shrink even further in the next 10 to 20 years.

The study also revealed:

  • 40.7% believe more single parents will have children independently.
  • 20.5% expect an increase in adoption and surrogacy.
  • 14.9% foresee co-parenting arrangements becoming more common.
  • A striking 47% said they believe more people will choose not to have children at all.

With both economic and social factors contributing to the trend, the report paints a clear picture: the traditional family model in the UK is evolving – and quickly.

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