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Disabled people could be missing out on social care support

Disabled people could be missing out on social care support

Up to 1.5 million working-age disabled people in England could need social care support but are not accessing it. This means they are likely to be missing out on help with daily activities such as washing, cleaning, socialising, and going to the shops. Healthwatch England polled 1504 working-age disabled adults in England and found one in four, 28%, could be eligible for support under Care Act criteria but have never had a social care needs assessment. You can read about the poll and the results below.

Why people don’t receive social care

The people who took part in the poll had unmet social care needs— they said they are eligible for social care under the Care Act but had never received social care due to multiple factors:

  • They didn’t think they could get any support (65%); 
  • They didn’t know where to go for support (34%); 
  • They were unable to afford to pay for care or contributions (26%); 
  • They found it too difficult to get support from councils or the NHS (14%);
  • Their local service closed (2%).

People who were excluded from the estimate include:  those who are waiting for a social care assessment, have been told they are ineligible for social care support, are supported by unpaid carers, access state benefits, or simply do not want any support. 

Also excluded were those who currently access care, which according to NHS figures is around 300,000 working-age disabled adults receiving publicly funded care and an unknown number of people funding their own care.

When people receive social care, they report positive experiences

Out of 20% of respondents who said they currently receive social care, over three quarters, 78%, agreed that the care they receive helps them live the life they want, compared to only nine per cent who disagreed with the statement. 

Two-thirds (62%) of the respondents who receive social care said it helps them stay healthy, while over half, 51%, said it helps them do the activities they enjoy. 

Just under half, 47%, said that their care enables them to keep themselves and their home clean, and the same number said it supports them to eat and drink properly. Just over one in five, 22%, of people said that their care supports them in working, studying, or volunteering.  

Eligibility issue

Under the Care Act, people may be eligible for social care support if their needs arise from a physical impairment or illness that negatively affects their ability to perform tasks quickly, independently, and safely, while also affecting their wellbeing. 

However, the research shows the extent to which eligibility might apply to more disabled people will remain unknown until people can easily interact with social care services or access assessments.

Annanya’s story: I struggle with routine household tasks

Annanya, 21, is a part-time student and ambulance call centre worker from Liverpool. She has several health conditions, including mental health problems, dyslexia, ADHD, suspected autism and diabetes. Together, these conditions make it difficult for Annanya to maintain her home and to run chores, and she needs support with daily tasks.

Annanya reached out to her local social care provider for support. However, the council told her that her needs were a medical issue.

“They kept me on a waiting list for six months just to get an assessment, then they called me to say they can’t help me”, she explained. “The assessment was also done remotely – nobody visited me at home. I live alone and struggle with household tasks and planning. Having some extra support could really help me manage these challenging aspects of my life”.

Louise Ansari, Chief Executive at Healthwatch England, said: 

“Social care can be transformative and change people’s lives. Our research highlights a really positive message, that for so many people care has helped them live independently, leading the lives they want to live, how they want to live them.

“Yet, social care in England is under financial strain, facing a workforce crisis, and requires major reform.  Our findings clarify those challenges, showing that the hidden demand for support could be as high as 1.5 million working-age adults in England. Not all these people will be eligible for publicly funded care, but far too many clearly live with some form of unmet need and don’t know where to turn for support. 

“We need to make sure there is more support for disabled people, and that this support is easy to understand and to access. Not only will this help people with their emotional and physical needs, but it will also help people who have told us they’d like more support to get into work, and it will contribute to taking pressure off NHS services.” 

We need to make sure there is more support for disabled people, and that this support is easy to understand and to access.

Call for reform

Healthwatch is calling for a fully funded and long-term reform plan for social care that will address workforce issues, offer more support for unpaid carers, and a focus on early prevention.

As part of the reform plan, Healthwatch England has set out three recommendations:

  • The Government should fund local authorities to raise public awareness of social care and find potentially eligible individuals through proactive outreach to disabled people.
  • Government should also dedicate funding to boost capacity and support councils in addressing existing care assessments and care package backlogs. 
  • There needs to be greater investment to ensure all disabled people accessing social care assessments are offered a Care Act advocate who can help them understand the assessment process and their rights.

Read the report in full

Tell us your experiences of accessing social care support at home

Care home forums: what you said

Care home forums: what you said

Throughout the Covid-19 pandemic we hosted regular online forums for relatives and friends of those living in care homes to tell us about the impact of visiting restrictions and ways they have been keeping in touch.

Those who attended these forums said that it helped to give them a voice and it was helpful to meet with other people in a similar situation. It was agreed that the group would continue to meet once every three months to discuss any issues or concerns. The minutes from the previous meetings and other useful information about care home visiting can be found below.

When the group last met on Tuesday 20 February, we discussed respite care, discharge from hospital and Enter and View.

Minutes from 20 February 2024

Care Home Online Forum – 20 February 2024

Minutes from 8 November 2023

Care Home Online Forum – 8 November 2023

Minutes from 27 July 2023

Care Home Online Forum – 27 July 2023

Minutes from 17 April 2023

Care Home Online Forum – 17 April 2023

Minutes from 9 January 2023

Care Home Online Forum – 9 January 2023

Minutes from 30 September 2022

Care Home Online Forum – 30 September 2022

Minutes from 9 May 2022

Care Home Online Forum – 9 May 2022

Minutes from 7 February 2022

Care Home Online Forum – 7 February 2022

Minutes from 8 November 2021

Care Home Online Forum – 8 November 2021

Care home visiting information

Read Essential Care Giver Myth-buster

 

The date of the next online care homes forum is to be confirmed. To register or leave feedback outside of the forum, please email Helen Brown: helenb@healthwatchnorthumberland.co.uk or call 03332 408 468.

Share for Better Care

Share for Better Care

Share for Better Care

Last year, Healthwatch received nearly 400,000 experiences of health and social care. When services are under pressure, feedback on care can be crucial to identify what is working and what issues need fixing. But not everyone’s voice is being heard.

‘Share for Better Care’ aims to help more people give feedback about their care, especially if their community experiences poor health outcomes.

Your experience matters to us

The simple act of sharing feedback is already helping to improve care for the people who use it. We want people to know that their feedback, no matter how small, has the power to transform health and social care across the country.

Together we can improve health and care, but we can only make a difference if we know about your experience.

Have your say

Please share your experience and help us make NHS decision-makers aware of what needs to change to improve access to care, for everyone. We’re completely independent and impartial, and anything you say is confidential.

Share your experiences

 

Care homes forum 27 July 2023

Care homes forum 27 July 2023

Care homes forum Northumberland

Thursday 27 July, 10am – 11am via Zoom

Please join us for our next online forum for those with family or friends living in care homes in Northumberland.

Are you a relative of someone who lives in a care home, or have you recently helped a loved one access respite within a care home? Would you like support or information from others who have shared similar experiences? Come along to our next care homes forum to share your feedback or simply come along to find out more.

We will also give an update on our ‘look and listen’ visits into care homes.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

See what we discussed at previous care home forums

Our Chair steps down

Our Chair steps down

Healthwatch Northumberland’s Chair, David Thompson, stepped down this month after six years in the role.

Healthwatch Northumberland is the independent health and social care champion for people in Northumberland and is delivered by Hexham-based charity Adapt (NE).

David has been at the helm since 2017 and has been instrumental in championing the voice of the people in health and social care decision making with those providing and commissioning services.

During his time as Chair of the Healthwatch Northumberland Board, David was involved with the Northumberland Health and Wellbeing Board, the Primary Care Commissioning Committee and the System Transformation Board, and for the past 12 months he represented the North East and North Cumbria Healthwatch Network on the Integrated Care Board.

David says “The past six years have flown by and it has been a real privilege to have shared a journey with such a dedicated band of staff, board members and volunteers. Meeting members of the public and professionals has been very rewarding as there has been and remains a determination from everyone to improve services even further.”

Before joining Healthwatch Northumberland David was Chair of leisure trust North Country Leisure and Tynedale Sports Council. Previous to that he was Head Teacher of Haydon Bridge High School for 19 years.

A new Chair is now in post and Peter Standfield of Morpeth will take the reins of the Healthwatch Northumberland Board.

David says he is ‘delighted’ with the appointment, adding “Peter will be a decided asset to Healthwatch Northumberland, bringing with him a broad range of experience and expertise.”

Healthwatch Northumberland’s Vice Chair Margaret Young is also leaving after six years in post. David told us “Margaret has been a stalwart of Healthwatch Northumberland since 2017. She has brought great knowledge and awareness to the board about what is happening in health and social care across the county.”

We’ll bring you more information about new chair Peter Standfield soon!

Help make care better

Help make care better

Help make care better in Northumberland for people with learning disabilities

People with a learning disability and autistic people are more likely to experience poorer care and face inequalities, despite needing to use health services regularly. Their needs are not always met by the system, leaving people and their loved ones feeling diminished or ignored.

Have your say

We are working with Healthwatch England to hear more from autistic people and those with learning disabilities about their experiences of care. Please share your experience and help us make NHS decision-makers aware of what needs to change to improve access to care.

We’re completely independent and impartial, and anything you say is confidential.

Share your story

You can also provide feedback on care by giving us a call on: 03332 408 468

Are you struggling to access health services this winter?

Are you struggling to access health services this winter?

With the NHS under extra pressure this winter, we need to hear your experiences of care to help services understand what is working and spot issues affecting support for you and your loved ones.

The NHS is facing added pressures this winter. This means that it can be more challenging for people to receive the care they need.

Feedback from the public can play a vital role in helping health and social care services understand what is working and spot issues affecting the care of local people.

This is why we have launched a campaign to get more people to share their experiences of care this winter.

If you or a loved one have used GPs, hospitals, pharmacies, care homes or other support services this winter, we want to hear about your experience.

Every experience matters

Have you faced challenges or delays accessing health and care services this winter? If you have, we want to know how this has affected your health and wellbeing.

Have you found accessing NHS services easy? Are there any aspects of the care you got that you really valued?

Your positive or negative feedback can help services hear what is working and spot issues affecting care for you and your loved ones.

Have your say

Please share your experience and help us make NHS decision-makers aware of what needs to change to improve access to care.

We’re completely independent and impartial, and anything you say is confidential.

Share your story

You can also provide feedback on care by giving us a call on: 03332 408 468

The power of your feedback

The power of your feedback

It’s easy to think that the feedback you give us doesn’t make a difference. We want to show you how this isn’t the case. Read some examples of how you helped the Healthwatch network and Heathwatch England make positive changes in care services.

1. Improving support for Long Covid patients thanks to you

We analysed the stories people shared with us about Long Covid throughout the pandemic. Although small in number, they told a powerful story.

You shared your stories with us, and, as a result, real change happened.

Here’s how:

You told us your GP didn’t understand Long Covid, often dismissing your symptoms.

We raised these concerns, and, as a result, the NHS is improving Long Covid resources for healthcare professionals to help them better diagnose symptoms and provide support.

Additionally, the NHS is investing in a new training programme to increase doctors’ and nurses’ knowledge of the tests, treatments and rehabilitation available for Long Covid.

What else?

You told us there wasn’t enough support for Long Covid mental health.

We raised these concerns and in response the NHS is now taking several steps to improve how services work together to support psychological and cognitive issues.

Oh, and one more thing:

You told us that not everyone was getting treated the same when it came to their Long Covid symptoms and it seemed unfair.

We passed this on to the NHS, who have now committed to improve this and understand why some groups are underrepresented when it comes to using Long Covid services.

Share your experience of NHS and social care services

We want to know more about the care you and your loved ones have received during the pandemic – both the good and the bad. Help your local NHS and social care services understand issues that are affecting care for you or a loved one.

Tell us your experience

2. The experience of waiting

You told us that you or your loved ones weren’t getting the help and information you needed while waiting for care – making you feel anxious, ignored and forgotten about.

We listened to you and set out recommendations to NHS England to change this.

Our key recommendations have led to commitments from the NHS to:

  • Improve communications with people while they wait, making sure they don’t feel lost or forgotten.
  • Make it easier for patients to update the NHS when there are changes in their condition.
  • Improve the support for people while they wait, such as better access to pain management, physiotherapy, and mental health support.
  • Provide support with transport and accommodation where patients need to travel for care.

The NHS has told us that people waiting over two years for care have directly benefited from our recommendations.

One of the key changes that have been made is around people having their transport and accommodation costs covered when offered quicker care away from their local hospital.

Without your feedback, we couldn’t have provided NHS England with these recommendations, and the option to be seen quicker could have been limited to only those who could afford it.

3. How your experiences have shaped NHS improvements around GP appointments

In March 2021, we looked at almost 200,000 people’s experiences of trying to access GP services. You told us that it was hard to book an appointment and you weren’t satisfied with the communication.

These barriers were especially difficult for people with disabilities, people from ethnic minority backgrounds and those on lower incomes.

With this feedback, we called on NHS England to take a formal review of the ways people access GPs to make sure they work for everyone. Your experiences informed every stage of the NHS’s review.

We’re pleased that the NHS’s report recognised improvements needed to be made. However, whilst we’ve highlighted a critical issue, even more must be done to ensure you can see a doctor regardless of where you live or your ethnicity.

4. The impact your feedback has made on NHS Dentistry

During the pandemic, more of you than ever got in touch with us to report problems seeing an NHS dentist. This problem certainly isn’t new and one we will continue to  raise. The impact this has been having on people’s lives has been heart-breaking to see. Many of you have told us you’ve been left feeling frustrated, ignored and, most importantly, in pain.

Thanks to your feedback, we were able to share your experiences with the Chief Dental Officer’s team at NHS England and the Department of Health and Social Care.

MPs have used your experiences in debates in the House of Commons and Westminster Hall, to highlight the significant issues people are facing. They have made it clear that they see access to dentistry as a critical problem that needs urgent action.

Whilst the NHS announced £50 million of extra funding for dentistry in January – we know it’s a fraction of what’s required. However, it is a sign that the NHS and Government are listening and responding to the need for action.

What’s new?

On 19 July, NHS England announced some changes to the dental services contract.

This included improved pay for dentists, to encourage them to take on more complex cases; flexibility around who will be able to provide treatment; and the ability to reallocate unused capacity to other dental practices.

We can’t yet say how much impact these changes will have, and a lot more needs to happen before everybody who needs an appointment can get one, but these are the first steps.

We won’t stop campaigning for your right to an NHS dentist.

Change takes time, but with your help, we will continue shining a light on the issues that matter to you.

Whether good or bad, it’s really is important that you share your experiences with us. Remember, your feedback is helping to improve people’s lives. So, if you’re ready to tell your story – we’re here to listen.

Things I wish I had known before my loved one went to live in a care home

Things I wish I had known before my loved one went to live in a care home

Hearing feedback from relatives of those in care homes, we know that the process of moving into a care home can be a very isolating and upsetting time. There are many different emotional and practical aspects to consider.

Sometimes decisions and choices have to be made very quickly. Even when there is more time to plan, there can be smaller, unexpected issues that arise and make you think ‘I wish I had known this before my loved one went to live in a care home’.

This list was put together by people who attended our care homes forums in 2021 and 2022. It is a simple list of things to think about and comes from their experiences of having a loved one living in a care home.

There will be other things which we have not thought of and if you have more ideas and tips, please let us know and we will add them in.

Things to do

  • Provide more socks than you think will be needed – with recognisable patterns
  • Provide slippers – two pairs at least
  • Keep a supply of clothes at your home to top up/replace items as needed
  • Label everything – clothes and other items – with your loved one’s name. They may change rooms but not their name!
    – iron in labels for clothes and shoes in addition to the home’s own labelling
    – use indelible marker to write name or room number on TV remotes and ornaments
  • Check if you can you use your own bed linen and/or curtains
  • Ask if you can move in small items of furniture. A small side table that sits against a wall gives a nice focal point for ‘knick knacks’ without taking up space
  • Think about things that brighten a room immediately – pictures, trinkets, lamps, throws, cushions, but nothing too valuable or fragile in case of breakages/loss
  • Put a favourite picture of your loved one when they were younger in a prominent place
  • Buy a spare remote control for the TV
  • Think about a small Christmas tree and decorations. Ask family and friends to send cards directly to the person in the home so they feel part of the celebrations.
  • Supply games, picture books etc. to help with visits
  • Take scented drawer liners which add a nice touch to a room

Things to know

  • Labelling is very important but things will disappear, move around the home and reappear – both in and out of your loved ones room
  • Remember to say hello to other residents – you are in their home
  • Care home tea is usually very milky!
  • Care homes can be very warm – wear layers
  • Are meal times protected – is visiting not allowed at this time or can you visit to help your loved one eat?
  • Find out the arrangements for Christmas – are you able to visit or take your loved one out of the home?
  • Leaving your coat and handbag in the car or in the manager’s office, so that you can slip out, can make leaving after a visit less stressful for you and your loved one.
  • Does the home arrange ‘virtual’ visits – who does them and how is your loved one supported to interact with the call?
  • It might be reassuring to ask what a ‘typical day’ looks like for your loved one
  • Visiting can be upsetting so it can be an idea to have someone to talk to afterwards or have a relaxing activity planned

Get in touch

If you’d like to speak to us about your experiences of care homes, care home visiting, information about care homes in Northumberland, or would like to know more about our forums, please get in touch.

 

Download the list as a PDF

Home care services in Northumberland

Home care services in Northumberland

Home care services are a vital way to support people by meeting their health and social care needs in their own homes.

‘Understanding the experiences of people using home care services, then, now and in the future’ was a project designed to find out the experiences of people using services and their family carers in Northumberland. We wanted to find out what is working well for people and also make recommendations for changes or improvements to services, based on what people told us.

This is particularly important at present given the disproportionate impact of the COVID-19 pandemic on those using home care services and their families, and the need to prepare for similar situations in the future.

We also wanted to follow up and extend on our previous work which focused specifically on the Coquet Valley, by gathering the views of people throughout Northumberland. Read Home Care Provision in Coquetdale.

This report is an overview of the findings and draws out key recommendations on the issues raised by those who use services and their carers. We have indicated where the recommendations are for Northumberland County Council Adults Social Care commissioners (ASC) or service providers (SP).

Read our findings and recommendations below:

Home care services in Northumberland

Events

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Events

Care Homes Online Forum

Care Homes Online Forum

Please join us for our next online care homes forum on Tuesday 20 February, 10am – 11am via Zoom.

Are you a relative of someone who lives in a care home or has used respite in a care home? Would you like support or information from others who have shared similar experiences? Come along to our next care homes forum to find out more or to share your feedback on experiences.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

See what we discussed at previous care homes forums

Care Homes Online Forum

Care Homes Online Forum

Please join us for our next online care homes forum on Wednesday 8 November, 10am – 11am via Zoom.

We will be hearing from a Care Quality Commission (CQC) inspector who will be giving an overview of the CQC’s role in regulating and inspecting care homes. There will be a chance to ask questions.

We would also like to hear your feedback of visiting your loved ones in care homes and accessing care home respite or simply join us to get further support or information from people with shared experiences.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

See what we discussed at previous care homes forums

Care Homes Online Forum

Care Homes Online Forum

Please join us for our next online care homes forum on Thursday 27 July, 10am – 11am via Zoom.

Are you a relative of someone who lives in a care home, or have you recently helped a loved one access respite within a care home? Would you like support or information from others who have shared similar experiences? Come along to our next care homes forum to share your feedback or simply come along to find out more. We will also give an update on our ‘look and listen’ visits into care homes.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

See what we discussed at previous care homes forums

Care Home Online Forum

Care Home Online Forum

Please join us for our next online care home forum on Monday 17 April, 10am – 11am via Zoom.

Following the discussion about respite care at the last meeting, Carers Northumberland will tell us about a survey it has done and what carers are saying about their experiences of respite care in the county. If you have had recent experience of this we’d like to hear from you.

We will also hear from the new Acute Admiral Nurse Service which provides specialist dementia support in care homes and the community in Northumberland.

We are starting a piece of work with a care home provider to learn from residents, loved ones and those who run and work in care homes what local lessons can be learnt from the pandemic and positive ideas that would help in other “lockdown” or restricted access situations.  We are at the early stages so come along and help us to shape what questions to ask and share examples of good practice you have experienced.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

Wellness in Blyth Event

Wellness in Blyth Event

We’ll be at Blyth Community Hub in Keel Row Shopping Centre on Wednesday 15 March, 10.30am – 12.30pm, for the Wellness in Blyth event.

Local community and support groups including health trainers, Magic Memories and Silxteen Bar, will be at the centre offering a friendly face and advice.

Come and speak to us in confidence about NHS and social care services you have used over the last 12 months or pick up some free information.

Care Home Online Forum

Care Home Online Forum

Please join us for our next online care home forum on Monday 9 January, 10am – 11.30am via Zoom.

At our next forum we will be hearing from Alan Curry, Senior Manager – Commissioning Northumberland County Council who will be there to give us an overview on the current situation for Northumberland care homes including information and guidance around care home respite and planned hospital discharge into care homes and associated challenges.

We would also like to hear from you about your current experiences of visiting your loved ones in care homes and your experiences of accessing care home respite or care home placement following a planned discharge from hospital.

To register for a space or give feedback outside the forum please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

Care Home Online Forum

Care Home Online Forum

Please join us for our next online care home forum on Friday 30 September, 11.30am – 12.30pm (not 19 September as previously advertised).

At our previous forums we have heard how visiting restrictions in care homes have affected people living there and their relatives, heard more recent experiences of visiting including as an ‘essential care giver’ and discussed ‘the things we wished we had known before our loved one moved into a care home’ to produce guidance to help others.

At our next forum we would like to hear your current experiences of visiting your loved ones and about how visits to the care home from professionals such as dentists, chiropodists and opticians are working.

We will also be starting to visit care homes to understand from a lay perspective how they are doing after the pandemic. Through talking to residents and carers we can get an insight into different aspects of the home, for example meals or activities and would like your advice to help shape this project.

To register for a space please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

Care Home Online Forum

Care Home Online Forum

Please join us for our next online care home forum on Monday 9 May, 10.30am-11.30am.

At our previous forums we have heard how visiting restrictions in care homes have affected people living there and their relatives, more recent experiences of visiting as an ‘essential care giver’ and discussed things ‘we wish we had known’ when our loved ones moved into care homes to help us produce some future guidance to support others.

At our next forum we will be joined by Alan Curry, Senior Manager – Commissioning Northumberland County Council who will try to answer any questions on Northumberland care home visiting alongside the current national guidance.

To register for a space please email: info@healthwatchnorthumberland.co.uk or call us on 03332 408468.

Care Home Online Forum

Care Home Online Forum

At our previous forums we have heard how visiting restrictions in care homes have affected people living there and their relatives, people’s experiences of other ways of keeping in touch during Covid-19 and discussed things ‘we wish we had known’ when our loved ones moved into care homes to help us produce some future guidance to support others going through similar experiences.

Please join us at our next care home forum, via Zoom, on Monday 7 February at 10am. We would like to hear from you about your current experiences of visiting your loved ones in care homes in Northumberland, how you have kept in touch during any Covid-19 outbreaks and your experiences of visiting as an ‘essential care giver’.

We would also like to explore further ideas to shape our guidance to support others whose loved ones may be moving or have recently moved to a care home.

If you would like to register for a space or would like some further information about this forum please contact Helen Brown at: helenb@healthwatchnorthumberland.co.uk or call us on 03332 408468.

Care Homes – keeping in touch with loved ones (online forum)

At our previous forums we have heard from people whose loved ones live in care homes about the impact of visiting restrictions and ways they have been keeping in touch. We also ran a survey and heard from care home staff and relatives of those living in care homes. All feedback received has resulted in our recent care home report which has been welcomed by providers and commissioners. You can read the report here:
We would like you to join us at our next forum on Monday 8 November, 10am-11.30am to share your current experiences of visiting your loved ones. We also want to produce some information and guidance to support people whose loved ones may be moving to a care home and would love your help and experience to develop this.
If you would like to register for our forum please contact Helen Brown by email: helenb@healthwatchnorthumberland.co.uk or call us on 03332 408468 (option 3).
Once registered, we will send you the Zoom link before the event.
If you can’t make the forum but would like to tell us your story, or would rather speak to one of our team in confidence please get in touch.