NEW Devon CCG abandons plans to ration hearing aids! Four reasons why this decision would have breached the CCG’s statutory duties.

Image of Sarah Collinson, NDCS Regional Director for the South West

Sarah Collinson, Regional Director for the South West

The North East and West (NEW) Devon CCG has confirmed that it has abandoned its decision to ration deaf patients over the age of 18 to just one NHS hearing aid. The policy to restrict hearing aids had been announced in an ‘Urgent and Necessary Measures’ notice issued in December and was intended to affect all adult hearing aid users in the NEW Devon CCG area; the only exceptions would be people with additional sensory disabilities and patients with conditions such as autism ‘where social cues may be particularly important.’

As NDCS supports young deaf people into early adulthood and campaigns for all deaf children and young people to have access to good quality audiology care, the NEW Devon CCG’s moves called for a swift response, not only because it was due to be introduced with immediate effect, but also because other cash-strapped CCGs might be considering similar measures and would be watching the Devon situation closely.

With local campaign action by NDCS members, regional TV news coverage and letters to the CCG and local MPs, we pulled out all the stops to try to convince the CCG to think again. Along with pressure from Ben Bradshaw MP and Action on Hearing Loss, our action seemed to pay off, with the CCG announcing shortly before Christmas that it would suspend the decision to ration hearing aids until the issue had been considered by its Clinical Policy Committee (CPC).

When I discovered that the CCG’s Governance Committee was to look at the issue again in early January, I sent a second letter to the CCG’s Chair outlining our concerns with the proposed policy and highlighting a number of key areas where it would seem to breach the CCG’s statutory duties under the NHS Constitution and the Health and Social Care Act (HSCA). This additional pressure has borne fruit, as just a few days after looking at the issue again, the CCG has announced a complete U-turn, with the rationing of hearing aids now entirely shelved.

In case other CCG’s might have been thinking of restricting adults’ hearing aids in this way, it’s worth highlighting the main reasons why they would be wrong to do so, as I pointed out to the NEW Devon CCG:

  • The CCG is duty-bound under the NHS Constitution and the HSCA to promote equality through the services that it provides and to pay particular attention to groups or sections of society where improvements in health are not keeping pace with the rest of the population. Deaf young adults are already significantly more likely to suffer mental health problems and face higher barriers to education; deaf people are four times more likely to be unemployed that hearing people. Any measure that will compromise their ability to use their hearing as effectively as possible will exacerbate these risks and disadvantage them further.
  • Patients have the right to expect local decisions on funding of treatments to be made rationally following a proper consideration of the evidence. NEW Devon claimed in the Urgent and Necessary Measures notice issued in December that ‘Evidence suggests that correcting hearing in the second ear … is far less cost-effective even though people derive some benefit from it.’ Yet, for 20 years or more, binaural aiding has been universally accepted as the most appropriate and effective treatment for the majority of cases of bilateral hearing loss. Not only would we dispute the apparent cost-savings to be made for the CCG, but we can’t accept that one hearing aid is as good as two. In fact, there is evidence that bilaterally deaf hearing aid users are disadvantaged if they have to rely on one-sided hearing. Hearing with just one ear or one hearing aid leads to problems for the brain processing sounds, understanding speech in background noise and localising the source of a sound.
  • The NHS Constitution also gives patients the right to be given information about the risks of treatment options available. The CCG’s Urgent and Necessary Measures notice didn’t mention the risks of one-sided aiding for people who are deaf in both ears. This would have to be taken into account in any comparative cost-benefit analysis of providing one hearing aid instead of two. Quite apart from the heightened risk of mental health problems and other comorbidities, there is also a risk of monaural aiding of bilaterally deaf people doing harm to the patient by causing non-reversible auditory deprivation to the unaided side. In a significant number of patients, auditory deprivation has been found to be significant and irreversible, and it isn’t possible to predict which patients are likely to be affected in this way.
  • The Health and Social Care Act stipulates that the CCG must make arrangements to ensure that individuals to whom the services are being provided are involved in the development and consideration of proposals where the proposals would have an impact on how services are delivered or the range of health services available. To our knowledge, the CCG conducted no consultation with patients and other stakeholders on possible hearing aid rationing prior to issuing the Urgent and Necessary Measures notice in December. The lack of transparency around the Quality and Equality Impact Assessment that should have been undertaken in advance of making any decisions on this issue  is very worrying, particularly given the substantial negative impacts that hearing aid rationing would have on large numbers of deaf people  across Devon.

We are relieved at NDCS the restriction on provision of NHS hearing aids has been abandoned in Devon, at least for now. However, we will have to remain vigilant going forward, not only in Devon but also nationally, in case other CCGs seek to address financial shortfalls with similarly crude and potentially harmful rationing measures.

Top 5 Reasons why NDCS is calling for Ofsted to inspect services for deaf children

Arthur Thomas Campaigns Officer

Arthur Thomas Campaigns Officer

We’re currently calling on the Government to require Ofsted to inspect local SEN services in England to make sure that local authorities comply with the law and to protect vital services for deaf children.

Why?

We have identified our top 5 reasons for why we are calling for Ofsted to inspect services for deaf children:

  1.  There is currently very little information about the quality of SEN services. Unlike mainstream teachers and schools, the skills of visiting Teachers of the Deaf and the quality of the overall service provided to deaf children are not subject to any formal scrutiny. We think this is massively unfair. Why should parents of deaf children get much less information about the support their child receives compared to other children?
  1. We are concerned that it will be easier for local authorities to cut services if they are not held to account for the impact these cuts will have. Freedom of Information requests have revealed that across England 37% of local authorities are cutting vital education services (such as Teachers of the Deaf) for deaf children in 2014/15.
  1. It’s unfair to leave it to parents to police the system – being a parent is already a full time job! Despite this, the Government have recently made loads of changes to the special educational needs framework in England without putting in place any system for external checks on how it’s all being implemented.
  1. Ofsted has already identified that local authorities are very weak on evaluation of SEN provision. In a 2012 Ofsted report on effective practice in services for deaf children, it was found that:

“There was limited strategic overview and no systematic approach across all services to evaluate the quality of services and their impact on improving the lives of deaf children.”

To date, nothing has been done to follow up this issue.

  1. The Government spends a significant amount of money – over £5,000 million – on supporting children with SEN through the ‘High Needs’ budget. Independent inspections of services would help focus on whether this funding is spent effectively and in a way that raises outcomes for children with SEN.

We believe that this small change to the inspection of schools could make a big difference to the quality of SEN services across the country. We’re waiting to hear from Ofsted and the Department for Education if they are going to take action on this. We will keep you updated with any progress or news on this important issue.

What do you think? Do you think Ofsted should be asked to inspect services for deaf children? Do you think someone should be checking the quality of your local service? Have your say and leave a comment below.

7 ways NDCS Family Officers support families to campaign

Emma Williams-Daly, Family Officer

Emma Williams-Daly, Family Officer

It’s my job (and privilege!) as a Family Officer to support families of deaf children in East London, providing practical help and supporting families to make informed decisions for their children.

1)    Raising awareness of campaigning 

Sometimes families aren’t aware that they can campaign. A big part of my job is to show families that they have the power to create change. If a family chooses to campaign they’re not only making a difference for their children but for all other deaf children too.  I discuss campaigning as an option with families, direct them to the campaigns pages on our website and encourage them to join the NDCS Campaigns Network.

2)    Attending local meetings

One important way that families in my area can make their voices heard is by attending their local Children’s Hearing Services Working Group meetings. You’re likely to hear these described as CHSWG meetings (or even ‘cheesy wig’ meetings!). These meetings are attended by key professionals that work with deaf children, and usually happen once a term. I attend all the CHSWG meetings in my areas and encourage families to go along too, as it’s a great opportunity to raise any issues that might be happening locally. Across the UK there are various ways families can make their voices heard, for more information about how to get involved in your area please contact the NDCS Helpline.

3)    Helping families to share their story

Sometimes family officers are asked to find a family that might be interested in providing a ‘case study’ for a campaign. Case studies work really well because real stories capture the imagination, and a personal story can illustrate a general point really well! NDCS only ever use case studies if families agree to it.

4)    Feeding back to Policy and Campaigns team colleagues

Our Policy and Campaigns colleagues across the UK influence key decision makers in local authorities and health services to ensure education, health, social care and other public services meet the needs of deaf children. Family Officers meet with their Regional Director and the Campaigns Team four times a year to discuss issues which are arising in our areas. This can be anecdotal issues that we might have noticed, feedback from parents and professionals, or things that have been raised at local meetings. This information can then be acted on, and sometimes turn into a fully-fledged campaign.

5)   Gathering families’ views 

If families can’t attend local meetings or consultations, I can make sure their opinions are heard by collating their views and presenting these to professionals. This can be done via a visit to a local group of parents, or on an individual basis. I also work with the campaigns team to arrange campaign meetings with parents in areas facing cuts to services for deaf children to make sure that parents can express their views with local decision makers. Information from families is crucial for informing our campaigning work.

6)    Supporting NDCS local groups

NDCS Local groups can be incredibly powerful when it comes to achieving positive change for deaf children. I know of lots of groups who have campaigned for improved services for deaf children and been very successful. I keep in touch with all the local groups in my area and support them in any way I can, this might be by promoting group membership within the community, going along to events, or sharing information.

7)    Putting families in touch with each other

If I’m supporting a few families who have the same issue, I might suggest that I put them in touch with each other, either directly or through an NDCS family event. Like with anything, meeting with other families with similar experiences can be really powerful. Some of our best campaign ideas have come from families getting together to find a solution!

If you would like further information or to be put in contact with any of the groups mentioned in this post, please contact the NDCS Helpline.

 

What will happen if Scotland votes No

Katie Rafferty, Policy and Campaigns Officer Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

When the Edinburgh Agreement was signed back in 2012 it set the legal precedent for a Scottish Independence Referendum, and set in motion a huge fervour of activity among politicians, civil servants, economists, academics, journalists and civil society – all grappling with the notion of Scottish independence. Huge amounts of time and resources have been invested into developing (and rebuffing) proposals of what independence would look like, what it would mean for Scots, and for the rest of the UK.

But with 30 days to go, polls are persistently indicating that on 18 September Scotland will choose to remain part of the UK. What will happen next if Scotland votes no? This seems to be a crucial, but somewhat ignored question in the debate.

A no vote still presents important opportunities for Scotland and the rest of the UK. Is devo-max, devo-plus or devo-something-else the future for Scotland? We have a Scottish Parliament and Welsh and Northern Ireland Assemblies: could the future of the UK be a federal state with a new English Parliament? Unfortunately these possibilities have been explored no where nearly enough and questions about what happens if Scotland votes no have been sidelined.

So what do we know about what will happen if Scotland votes no?

1)   Scotland will continue to be governed as it is now. 129 MSPs will continue to exercise their devolved powers at Scottish Parliament in areas such as education, health and social services, housing, local government and the environment. 59 Scottish MPs will continue to exercise their reserved powers at Westminster in areas such as benefits and social security, employment, defence, foreign policy and immigration

2)   The balance of these powers will gradually shift, with more being devolved to Scottish Parliament. We already know that the Scotland Act (2012) is a new piece of legislation which will be implemented from 2016 onwards. This will give the Scottish Parliament a new set of financial powers including a new Scottish rate of income tax and borrowing powers. However the Scottish Government says the Act falls short of full devolved powers.

3)   More powers in tax and social security will be transferred to the Scottish Parliament in the event of a no vote. This is according to a recent joint declaration signed by David Cameron, Nick Clegg and Ed Miliband. However Alex Salmond has dismissed the declaration as a “rehash of the same vague promises”.

4)   The detail of each party’s vision for the constitutional future of Scotland will be outlined in their manifestos and put before the people of the UK to choose from at the next general election in May 2015.

5)   Scottish Labour however has already outlined their “positive economical, constitutional and social alternative” to independence in Scotland in the Together we can document. If Scotland votes no and a Labour government is elected they promise a fundamental review of the NHS in Scotland and reforms to childcare with a view to developing a system to rival the best in the world. This would initially provide 25 hours of childcare for all 3 and 4 year olds, and 15 hours a week for half of all 2 year olds.

6)   There is no arrangement for another referendum on independence. The Edinburgh Agreement only makes provision for a referendum to be held by the end of 2014, and it is the view of the Scottish Government that this is a “once in a lifetime opportunity”.

7)   From polling data it seems that even if there is a relatively big win for the No vote, there will still be over 1 million people in Scotland who have voted to leave the UK. This will set a demanding precedent for the SNP to be included in future discussions about Scotland’s constitutional future. It will also require a compelling vision from this Scottish Government and the next to ensure we move forward as a country in a unified way.

8)   As mentioned in the last blog, many vital services for deaf children and their families are already devolved to Scottish Government and so much will remain unchanged if we vote to remain in the UK. Our schools, colleges, hospitals, audiology services and social services are designed and delivered locally and a no vote will not change that.

10 things that will happen if Scotland votes Yes

Katie Rafferty, Policy and Campaigns Officer Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

A wealthy businessman is so sure that the outcome of the Referendum will be No that he recently put a £600,000 bet on it. But what if he’s wrong? A sore loss for him no doubt, but what will it mean for the rest of us?

The Scottish Government has published 670 pages worth of detail about what an independent Scotland will look like, but campaigners on the No side have rebuffed much of what it contains. Is there anything we can be sure of if Scotland votes Yes?

 1)   Scotland will be an independent country and the Scottish Parliament will have new powers in the economy, taxation, welfare, energy and defence.

2)   There will be no more Scottish MPs. A general election in an independent Scotland will be held in May 2016 and this will decide the first Scottish Government charged with leading a fully independent Scotland.

3)   Ahead of independence, there will be a series of negotiations with the UK Government to determine its conditions. Will we keep the pound? What proportion of the national debt is ours? How will pensions work now for Scots who have paid into UK pensions during their working lives?

4)   Independence will happen in March 2016, so the current Scottish Government will still be in power (even only for a few months) and it will have a big hand in shaping what it looks like.

5)   Their White Paper outlines what an independent Scotland will look like if they are the first Government elected in 2016. It promises:

6)   “A transformational extension of childcare”, aimed at making Scotland the best place in the world to grow up, and making it easier for parents – especially mothers – to return to work. The proposed new plans would see 2, 3 and 4 year olds being eligible for 30 hrs of flexible childcare per week, saving families £4,600 per year. Critics have stressed that under devolution Scotland already has the power to implement these reforms.

7)   The White Paper has outlined that in an independent Scotland the “bedroom tax” will be abolished. Earlier this year Labour and SNP MSPs reached an agreement to budget for £50 million of funds reserved to mitigate the impact of the bedroom tax in Scotland. An independent Scotland would be able to abolish the Act altogether and the White Paper outlines this will save 82,500 households, including 15,500 households with children £50 per month.

8)   The White Paper promises a halt to roll-out of Universal Credit and Personal Independence Payments in Scotland, with the intention that future Scottish Governments will develop reforms to the welfare system to ensure it meets Scotland’s needs.

This may present opportunities for deaf children and their families in Scotland to influence a new welfare system, and avoid the introduction of Personal Independence Payments which NDCS lobbied against last year.

9)   Alex Salmond has been clear, rocks will melt before University tuition fees are introduced in Scotland. University education is already free at the point of access for Scottish students, but the White Paper suggests having full control of finance in Scotland will allow sustainable funding options to be pursued to make sure this remains the case into the future.

10)   The fact remains that control of the many vital services for deaf children and their families is already devolved to Scottish Government and so much will remain unchanged in an independent Scotland. The way that schools, colleges, hospitals, audiology services and social services are run is unlikely to change given that they are already designed and delivered locally.

The latest YouGov poll sees Yes at 35% compared with No at 55%. But even if there is a No vote that won’t mean complete status quo. David Cameron, Ed Miliband and Nick Clegg have signed a three party pledge that Scotland will be given new tax and legal powers in the event of a No vote in September.

So what could the No scenario mean for Scotland, and for deaf children and their families? Check out the blog next week where we’ll explore this important question.

7 good things about reform of additional learning needs in Wales

Elin Wyn, Policy and Campaigns Officer Wales

Elin Wyn, Policy and Campaigns Officer Wales

The Welsh Government recently published their plans to introduce a new law to reform the support children and young people get if they have additional learning needs (ALN).

The new law will replace the laws we have now around statements of special educational needs (SEN) and support for young people with learning difficulties or disabilities in post-16 education and training.

NDCS Cymru broadly welcomes the plans – but there is still a lot of work to be done on the nitty gritty of how the new system will work.

Here are seven things we like about ALN Reform in Wales.

1)   Using a new term – additional learning needs.

We think this is better than “special educational needs” because it’s a more accurate reflection of the challenges face by deaf children and young people.

2)   Children and young people from 0-25 will be included in the new system

We hope that this means that babies and toddlers who are diagnosed deaf will get support at a very early stage. They will then have a better chance of developing speech and language in that crucial pre-school period.  Including young people up to 25 is a great idea too, as it will hopefully improve the transition between school and college.

3)   Individual Development Plans (IDPs).

These IDPs will replace statements of SEN and Individual Education Plans (IEP) under School Action and School Action Plus for all children and young people with additional learning needs from birth to 25. Having one plan that can be updated and reviewed should improve transition between pre-school and nursery, nursery and primary, primary and secondary and onto post 16 education or training.

4)   Person centred planning

Children, young people and parents must be involved in planning an IDP and their views must be taken into account. This is great news as it will make sure that the new process is centred on the needs of the child.

5)   Everyone has a right of appeal

Sometimes things go wrong – maybe the support a child needs is not provided, or it’s decided a child doesn’t need support. Under the new proposals everyone who has an IDP can appeal to a tribunal – though they will have to try to resolve issues locally first. Also if you think your child should have an IDP and you are refused you will be able to appeal. Young people in post-16 education and training will also have the right to appeal – which is a big step forward.

6)   Sharing information

Under the new plans local authorities, health boards and further education colleges will have a duty to co-operate and share information about how they assess, plan and deliver the support that a child or young person needs in the IDP. This is a really positive step forward for families who get frustrated with the lack of co-ordination between different agencies

7)   Additional Learning Needs Co-ordinators (ALNCOs)

The new system will place a duty on mainstream schools to have a designated person responsible for co-ordinating support and provision for pupils with additional needs. That person will also have to be either qualified or experienced or both. We hope that these ALNCOs will also have to have training on low incidence ALN like deafness.

Although we welcome these positive steps there is still a lot more that can be done to make sure deaf children and young people have the support they need in nurseries, schools and colleges. We will be working with the Welsh Government over the next few months on the new Code of Practice that will be introduced alongside the new law. We’re not exactly sure yet when the new law will be passed – hopefully before the next Assembly Election in 2016. But you can rest assured; NDCS Cymru will be working hard to make sure that the needs of deaf children are met in this new system.

You can read the full response that we sent to the Welsh Government here. Please sign up to support our work by joining our Campaigns Network.

 

19 things I’ve learnt from working at NDCS

Jonathan Barnes - NDCS, articles we’ve been reading this week

Jonathan Barnes, Campaigns Assistant

This is my final week at NDCS. I’m leaving to move to the US and lots of exciting new opportunities there. I thought this would be a good opportunity to reflect back on my time working for the best deaf children’s charity out there!

1)    Readers of this blog love listicles! Two of our most popular blog posts are this one and this one. So I thought I’d try and replicate that. If you want to have a go, send your ideas to campaigns@ndcs.org.uk

2)    Lots of facts on deafness – here’s 11 to get you started

3)    We have some great parent campaigners

1

4) The Policy and Campaigns Team rocks at winning internal competitions – from best at fancy dress, to best Christmas decorations and quiz winners, we are undoubtedly the best team!

Trophy

5)   By working together, we can make a difference – I’m particularly proud of getting a commitment from Birmingham Council to protect services for deaf children in 2014/15. We have to keep working to make sure they keep their commitment.

6)    Eating bacon every Friday morning (known in the office, unimaginatively, as Bacon Friday) isn’t particularly healthy…but it is tasty!2

7)    Having Regional Directors in every region of England makes NDCS much more able to challenge cuts at a local level with better knowledge of the area.

8)     I’m a pioneer

9)    No language is as fun to learn as BSL…Layout 1

10)   …And no language is more fun to sing in than sign language!

11)    Parents sharing their stories makes a difference. Last year, thousands of parents shared their story with their MPs to help us secure a debate in parliament.

r_seaman@hotmail.com

12)   Softball. NDCS staff play in the second largest softball league in the UK, the London Charity Softball League. We even reached the final a couple of years ago!Softball

13)   Freedom of Information requests are a great way of finding out what is happening across the country to services for deaf children.

14)   NDCS works internationally – not just in the UK!NDCS Campaigns Blog - DCW Ecuador Exchange

15)   Some great deaf awareness tips from working around deaf staffsuperkids-template (2)

16)   International Lumberjack Day exists.8

17)   NDCS works with thousands of families each year, addressing all levels of deafness

18)   80% of children have experienced glue ear by the age of 10. That’s four in every five children.Jonathan aged two

19)   The staff and volunteers at NDCS all work really hard to make the world that little bit better for deaf children – please continue to support them!