by Rachel Mewes from Making Chromosomes Count – The DS Community News
“The Human Rights Act is the main law that protects my human rights. This law means staff in public bodies (including NHS) must always respect and protect my human rights, including during the Coronavirus period and when making decisions about restrictions and actions about the Coronavirus.” (Learning Disability England)
Considering a loved one, whether it be your child or a relative, requiring hospital treatment is not something any of us wants to do. Yet, in the current climate, where every other word we hear on the news is ‘Coronavirus’, it is perhaps wise to think about planning for the possibility of a hospital admission requiring treatment for COVID-19. Having some strategies in place, should your loved one need medical treatment, can help to ensure that an admission can run more smoothly for the person with a learning disability. We are currently living in unprecedented and worrying times. For those of us with children or loved ones with Down’s Syndrome, the thought of them contracting COVID-19 and requiring medical intervention can be frightening, but we can prepare ourselves, and protect their rights, in a number of ways
Leading learning disability charities Mencap and Learning Disability England have both recommended filling out a ‘Hospital Passport’. A hospital passport is a document that collates vital information on the patient, in an easily accessible form, so that healthcare professionals can provide tailored care to an individual with a learning disability. It is likely that over the coming months our healthcare staff and hospitals are going to be very busy, therefore having information to hand, in written form, including aspects such as a person’s medical history and communication preferences can benefit all parties. This guidance is significant in ensuring that the person’s rights are respected and their dignity upheld. It would be preferable that the passport is laminated or sealed in a plastic wallet, in order for it to be cleaned easily and remain in an undamaged condition.
We advise readers to use the LD England to use the simplified 2 page version they have created:
“An important preparation is to update your Hospital Passport. Some family members have worked with nurses and British Institute of Human Rights to make an emergency COVID-19 hospital passport that means medical professionals can get the information they need quickly. Here is a template. You can find a presentation on filling in this template here.”
The DSA have collated a list of hospital passports currently available to download:
Mencap’s Hospital Passport can be found here:
As it currently stands, we are aware of some hospital trusts allowing adults with learning disabilities to be accompanied to hospital by one carer. Learning disability charities are seeking further information from NHS England to clarify this, but we would recommend that you check with your local hospital trust about their current procedures. It is not thought that children with learning disabilities would be expected to be admitted to hospital alone, but, again, we are seeking clarification from NHS England. Understanding the way your local trust is operating currently, regarding admissions, means you can plan ahead. It may also be useful to create a list of contact numbers for key carers or workers to take to hospital.
Learning Disability Nurse Liaison
Learning disability nursing teams working in hospital trusts can offer support during a hospital admission. It would be recommendable to contact the learning disability team at your local hospital trust as soon as you can in order to discuss the procedure for admission of a person with a learning disability. Your local nursing team should be able to advise on reasonable adjustments that may be required. Having a conversation about your loved one’s needs and requirements with your local trust’s learning disability team is beneficial in planning for how care can be managed appropriately should it be needed.
In order to provide a succinct and clear history of a person’s symptoms, should they develop them, it is advisable to keep a record of any symptoms from day 1 of them arising, This should include, temperature and the time it was taken, frequency of coughing, any pain that has been reported and general notes on any of the symptoms of Coronavirus as detailed by NHS guidance. It is important to note that diagnostic overshadowing can occur when a person has Down’s Syndrome and that clinicians should be aware of this. A written list of symptoms can be handed to medical staff on admission, which can be beneficial where there may be barriers to communication.
Most extremely vulnerable people will now have received a letter from the UK government about shielding them from Coronavirus. If you think the person you care for falls into one of the categories of extremely vulnerable people and you have not received a letter by Sunday 29th March 2020 or been contacted by your GP, you should discuss your concerns with your GP or hospital clinician. Further advice on shielding can be found here:
If you feel you need more information, Learning Disability England have collated current resources being produced on Coronavirus, by a range of charities, on their website.
1. Print out and fill in a hospital passport. Laminate it or seal in a plastic wallet.
2. Enquire what your local hospital trust’s current policy is on allowing carer’s to accompany persons with learning disabilities to hospital.
3. Contact your local trust’s learning disability liaison team to discuss planning for a potential admission.
4. Keep a written list of symptoms as soon as they begin. This will provide clarity for the medical staff during admission and is especially important where there may be barriers to communication.
5.If you believe that anyone you care for needs to be identified as being shielded, contact your GP to discuss this.