A Registered Charity - No. 1103850

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Jos Smith
Chair
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We hope you are all safe and well. In this fast-moving situation, we are doing all we can to share important information with you in a timely manner, using all our communication channels: this website, email and on social media. Our community is incredibly supportive and strong.  Whilst we are not able to get together in person, we can still support each other.

There are mountains of advice out there at the moment, and we wanted to send you the key points for those who care for someone with Down syndrome.

We are in regular contact with:

  • Down’s Syndrome Association (DSA) 
  • Down’s Syndrome Medical Interest Group (DSMIG) 

We also monitor the Public Health England and NHS websites, see below for links to the most up-to-date information and advice:

DSO Trustees


LATEST NEWS: 29th January - Here is a useful PECS (Picture Exchange Communication System) story board about going for a vaccination injection, produced bu Bucks NHS.


LATEST NEWS: 31st December - Following yesterday's announcements from the UK government, we thought it would be helpful to capture some of the latest updates, advice and guidance for the impact on our members - people with Down's syndrome and their families living in Oxfordshire. We know most of our children and young people are not on the extremely clinical vulnerable list, but wanted to ensure information about this was included on this message if that is applicable to you and your family.

Click here for the UK government's updated page about education and childcare, with lots of useful information for our families.  

Click here for an update from the Down's Syndrome Association (DSA) with new guidance for people on the Extremely Clinically Vulnerable list in Tier 4.

Click here for the UK government's guidance on Extremely Clinically Vulnerable people (updated today).

Click here for the latest statement about vaccines from the US Down's Syndrome Medical Interest Group, issued on 16 December. This is a useful read. (Note, the DSA has reviewed and shared this information on their site.)


LATEST NEWS: 3rd December

Adults who have Down’s syndrome
The DSA have flagged the announcement that the Government made at the start of November, that adults (18+) who have Down’s syndrome have been added to the list of people who are classed as ‘clinically extremely vulnerable’ (CEV) (2 November). 

GPs have been instructed by the NHS to ensure that the records of all their adult patients who have Down’s Syndrome have them coded as being on the CEV list. GPs were also provided with a letter that explained the change, along with an easy read version to send to their patients.

Sadly, the DSA have also heard many examples of GPs being slow to take action on this issue. If you/someone you support has not heard from your GP, the DSA has designed a template letter for you to fill in and send to your GP.

The announcement of the COVID-19 vaccination priority list last week makes it even more important that the medical records of adults who have Down’s Syndrome are up to date and correctly coded. People will not be able to access the vaccine as soon as possible if they are not coded as being on the CEV list. We are delighted that, as our result of our efforts, adults with Down’s Syndrome have been elevated on the vaccine prioritisation list to the same level as those aged 70+

16+ now added to the CEV list
The DSA are also pleased to note that the published vaccination priority list also includes people who have Down’s Syndrome who are over 16, at a higher level than previously. They will now be included within the sixth priority group. 

The vaccination priority list:

  1. residents in a care home for older adults and their carers
  2. all those 80 years of age and over and frontline health and social care workers
  3. all those 75 years of age and over
  4. all those 70 years of age and over and clinically extremely vulnerable individuals
  5. all those 65 years of age and over
  6. all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
  7. all those 60 years of age and over
  8. all those 55 years of age and over
  9. all those 50 years of age and over

Adults who have Down’s Syndrome in England are also able to request a free, four-month supply of vitamin D. This is great news as it is something we had asked the government to put in place, after discussion with the T21RS research team. 

During autumn and winter, everyone is advised to take vitamin D to keep their bones and muscles healthy and to support their general health. Click here to find additional information about this, as well as a form to sign up for the free supply

Keeping in touch
The DSA regularly update their COVID-19 pages… go here for the latest news. The DSA Helpline (0333 1212 300, This email address is being protected from spambots. You need JavaScript enabled to view it.) and closed Facebook groups are also available if you have specific questions or concerns.

The DSA are holding free, 30-minute update webinars every Friday morning. These sessions give participants the opportunity to ask questions and for the DSA team to share the latest news, resources and responses from government. For details of the latest session, visit our Online Training page.

The DSA has fought hard to improve the prioritisation of adults who have Down’s Syndrome for the vaccine, and are pleased that the government have also listened to us with regards to vitamin D.

Children who have Down’s syndrome
We have been informed that very few children are at highest risk of severe illness due to the virus and that research studies have not found evidence that children who have Down’s Syndrome are at higher risk than children who do not have Down’s Syndrome.


LATEST NEWS: 14 November

COVID-19 classification of adults with Down’s Syndrome – and what about children?
On 3 November, it was announced that adults (18+) who have Down’s syndrome have been added to the list of people who are classed as clinically extremely vulnerable.

Flaudia Petrone (DS Lead, Community Paediatrics, Oxford University Hospitals) has forwarded us the following statement from the Chair of Down’s Syndrome Medical Interest Group. 

We appreciate that this will have a significant impact on people’s lives and recommend people who have Down’s syndrome / families to have a conversation with their GPs and health professionals.

We are aware of the recent publications that may have influenced this decision. However, this research only considered adults (people aged 18 and above) and not children.
 
Further research from the TS21R has just been published, which does include children and acknowledges that further research and evidence is needed.
 
Hence, as the research evidence is relating to adults and not children, we are advocating that children who have Down’s syndrome should only be considered as clinically extremely vulnerable if they have additional health needs as classified in Group A of the RCPCH list.

This includes children who are at risk of severe infection due to immunodeficiency due to being on immunosuppression drugs or severe combined immunodeficiency (not just having Down's syndrome).

It is important for all children who do not come in the above category to attend school and follow the general advice on keeping safe as stipulated by gov.uk and their local government policies. It would be desirable for families to have the opportunity, if possible, to have a discussion with their health professional if they worried and are considering keeping their child at home and not sending them to school.
 
It is important for all people (adults and children) who have Down’s syndrome to receive the flu vaccine and access medical attention appropriately.
 
It is important for people who have Down's syndrome and their families to understand the implications of the government advice, which is available in an easy read format on the Down’s Syndrome Association  (DSA) website.

COVID-19 deaths of people identified as having learning disabilities
There was a very helpful update on the DSA website on Thursday in light of the publication this week of two reports on deaths in the first wave of COVID-19, which was also reported widely in the media.

You may also wish to look at ‘COVID-19: deaths of people with learning disabilities’ from Public Health England.

For further reading, here are the links to the two named reports:
https://phe-newsroom.prgloo.com/news/learning-disabilities-rept
http://www.bristol.ac.uk/sps/leder/news/2020/leder-covid-19-reviews.html

I hope this information is a helpful guide as we all try and navigate the challenges of COVID-19, and stay safe from the virus. 

As Flaudia, the DS Lead at the Oxford University Hospitals, wrote to me - and to reiterate the advice from earlier in this email: “If families are worried, they should contact their consultant/GP/medical professional that is leading care on their child or family member. I am sure we will get more information as more research is gathered.” 


LATEST NEWS: 3 November: Keeping safe from coronavirus: new guidance for adults who have Down’s syndrome. From this week, adults (18 and over) who have Down’s syndrome are to be added to the group of people who are classed as clinically extremely vulnerable. The DSA have issued the updated guidance for adults with DS. 


LATEST NEWS: 15 September: COVID Testing & School Exclusion

DSO are aware of the fast emerging issue regarding our young people being sent home from their school/setting and being told a negative COVID test is required for them to return.  This situation is raising two immediate problems: 

  1. some settings are sending home our children for symptoms as innocent as a runny nose or cold - and no COVID symptoms 
  2. once sent home, our families are struggling to access the COVID test required for their child to return to school 

We are also aware that the COVID testing process itself is not SEN friendly.  DSO is in active discussions with a number of bodies to try and gain some support for our cause, to try and gain access to priority testing for our community and to ensure that our children are not sent home from school without good reason. 

Today, we have received the following guidance from the Community Paediatric Team at the John Radcliffe.

Guidance is very clear that the symptoms that require a COVID test (and self-isolation until negative result) are: 

  • a new continuous cough and/or 
  • fever and/or
  • loss of taste or smell 

See https://www.gov.uk/get-coronavirus-test for the latest guidelines. Children with runny noses and colds SHOULD BE ALLOWED to attend school if they are otherwise well and without the symptoms above. If parents are running into barriers to this guidance then they must please contact their GP/Clinical nurse specialist or paediatrician for support. Alternatively they can also contact the School Health Nursing Teams (https://www.oxfordhealth.nhs.uk/school-health-nurses/). 

If you have tried all of the above and your child is still being inappropriately excluded, please let us know via This email address is being protected from spambots. You need JavaScript enabled to view it..  

We are also in contact with OUH and Oxfordshire County Council about COVID testing and its challenges. We are trying to raise awareness of the need for SEN families to be on a priority list for access to COVID testing, as without that access, our children are at risk of being even further behind in their schooling due to exclusion.  We will keep you updated of any progress on this front. 

In the meantime, please stay safe. 
DSO Team


LATEST NEWS: 14 September

IPSEA update on COVID-19, school re-opening and SEN provision. Updated information about how the COVID-19 measures will affect children and young people with special educational needs and disabilities (“SEND”).


LATEST NEWS: 19 June

DSA: The Down’s Syndrome Association is involved in an international study looking at the effects of COVID-19 in people who have Down’s syndrome, and the conclusions around risk that have been extrapolated for our audience.

GOV.UK: This guidance has been updated to reflect the announcement to move forward with wider opening of education and childcare settings


LATEST NEWS: 14th May

DSA: Supporting individuals who have Down’s syndrome and their families through difficult times.


LATEST NEWS: 12th May 2020

GOV.UK: Coronavirus (COVID-19) - implementing protective measures in education and childcare settings.


LATEST NEWS: 8th May 2020

TAX CREDITS - It’s been announced that people who cannot work their normal hours will not see any change in their Tax Credits if their hours reduce. Further details of this can be read here.

LOCAL SERVICES & FOOD DELIVERY DIRECTORY Updated

We would like to share with you an updated version of the Local Services Directory that was first produced three weeks ago.

Some new additions to the directory that we want to highlight are: 

  • Home Schooling section:  now includes links to a visual timetable, lessons by the Oak National Academy, resources from the Reading and Language Intervention for Children with Down Syndrome (RLI) and a special edition of the much-loved BBC Get Well Soon programme.
  • Mental Health section:  includes details of CAMHS’ 24-hour hotlines for both parents calling for children and young people – including any specific behaviour changes you are seeing at this time – and a separate number for parents/adults to call for their own needs.
  • Money section:  links to details of the recent announcement (4th May) that those people who cannot work their normal hours will not see any change in their Tax Credits if their hours reduce.
  • Prescriptions section:  news that AbiMeds, a group of volunteers can collect and deliver prescriptions for those who having difficulties or self-isolating in Abingdon and surrounding areas.
  • Special Needs Support section:  links to the NSPCC’s advice and resources for supporting children with Special Educational needs

We will continue to update this directory at regular intervals. If you know of any local or national services that might be useful for other members, please do share them on Facebook, and/or send details to me at This email address is being protected from spambots. You need JavaScript enabled to view it.. We will make a note for the next issue of the directory.  

As always, if you have any questions about how DSO can support your family, please do get in touch.


LATEST NEWS: 16th April 2020 - LOCAL SERVICES & FOOD DELIVERY DIRECTORY

We have been working with some charity partners in Oxfordshire to create a local Services Directory, which we hope will be of use to you.

This is intended as a quick reference guide to a wide variety of services that are available, including ways to access local volunteer services and a range of food & provision shopping sources. We hope it will prove useful as I know many of us are experiencing challenges securing those precious supermarket delivery slots.

We are aiming to update this directory at regular intervals. If you are aware of any local services that might be useful for other members, please do share them on Facebook, and/or send details to me at This email address is being protected from spambots. You need JavaScript enabled to view it. and we will make a note for the next issue of the directory.


LATEST NEWS: 3rd April 2020

Since our post about hospitalisation yesterday we have received some important extra information from the nurse practitioner for children with Down's syndrome at the John Radcliffe hospital.

She’s been in touch with the adult learning disability nurse, Oxford University Hospitals (OUH) who has confirmed that:

“The visitor restrictions will not directly apply to carers. As an organisation, we value the important role of family carers and support workers to provide care and advocate for the people they care for, and view this role as different to visitors. We will continue to work with carers and ward staff to assess individuals needs at this time, and establish what is required to meet needs and minimise the risk of the spread of COVID-19.

“The Learning Disability Liaison Nurse team can support in identifying needs and how we can best meet them. We appreciate that the availability of family carers and support workers will be changing as the current situation unfolds, and each situation will be different. Having Hospital Passports and care plans ready to bring in will be very helpful.”

The adult learning disability nurse has asked for the Learning Disability (LD) team to be contacted if an adult is admitted into the OUH and they will support the wards in making sure the patient’s needs are met. They are available Monday to Friday.

Things are changing all the time and being reviewed but at the moment they are welcoming carers for patients with a learning disability. It is great to see there is a LD team who have a presence in the trust and will be able to support families during this time.

Just to reassure parents or carers with under-age children with Down’s syndrome: as with adults, OUH are allowing one parent/carer per patient.

Names of nurses and contact details have been removed from this post for confidentiality reasons. If you need them please contact us.


LATEST NEWS: 2nd April 2020

The DSA has advised that people with Down's syndrome should have a hospital passport, which is a document with vital information about the person for NHS staff. 

Please find a one-page template and a two-page template for this document. Please use which one suits you and your child best. We also have a model example of how the one-page form can be filled in, and Learning Disability England also have a presentation on how to fill in the two-page form

If possible, include a photo of your loved one with their family and laminate the passport so that it can be cleaned if necessary. You can also put it in a clear plastic pocket for filing or a clear plastic bag. Don't forget some Blu tack if you've got some.

Pack a bag – even if your child is not ill – so that you have everything you need for a hospital stay. You may not have time to do it in an emergency.  Oxford University NHS Trust have stated that those with learning disabilities are allowed one carer with them in hospital. 

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Please do seek medical help for your child if they are ill. Rowena Roberton, nurse practitioner for children with Down's syndrome at the John Radcliffe hospital, has advised us of the following:

"Thank you for everything you are doing with social distancing, keeping yourselves and your children safe. It is important to remember that children can still become unwell with other illnesses throughout this Covid-19 period.  If your child does become unwell with an acute illness, please call your child’s GP or 111 in the first instance.  They may have a temperature for a different reason. If you are worried that your child’s symptoms are getting worse, please seek medical advice.  It may be difficult to get through but keep trying. 

"If you think your child is significantly unwell and you can’t get the medical advice you need, then please take your child to the Emergency Department.  The Emergency Department are taking every possible infection control precaution in response to the Covid-19 so please don't be alarmed if you see everyone wearing masks in the emergency department."

If you would like any advice, Rowena is available on the phone Tuesday, Wednesday, and Thursday between the hours of 09:00 to 15:30. She will inform DSO as and when this changes. Her numbers are: 01865  231996 or 07920 814131.


LATEST NEWS: 24 March 2020

  • The new NICE critical care guidelines, published on Sunday 21 March, suggested that people with learning disabilities, Down's syndrome for example, would not get the same healthcare as the rest of the population should they need it. NICE has now tweeted an update to say that these guidelines, called the Clinical Frailty Score, are not to be applied to people with learning disabilities and cerebral palsy. NICE will update their Critical Care Guidelines to reflect this.

LATEST NEWS: 23 March 2020

Rowena Roberton, our local Down's Syndrome Nurse Specialist has been temporarily redeployed away from her role. She advises that families with any questions to contact community Paediatrics on 01865 231994.

GOV.UK: Coronavirus (COVID-19): Guidance on vulnerable children and young people.


LATEST NEWS: 20 March 2020 

GOV.UK:  Closure of educational settings: information for parents and carers. Information for parents and carers about the closure of schools and other educational settings following the outbreak of coronavirus (COVID-19).

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