Advice for patients and service users with a learning disability, autism, dementia or a mental health condition
We are living through a difficult and unprecedented time that is challenging for many people across the country. For people with a learning disability, autistic people, people with a mental health condition or dementia there may be extra challenges, and people may experience a whole range of difficult emotions or be experiencing emotional distress. Some may be struggling with feeling lonely and isolated, some perhaps are feeling anxious or worried, or are struggling to get basic needs like food and medicine.
We want you to know that NHS services, including mental health and learning disability services, are still very much open and here to support you.
Accessing support from services
- Don’t let a concern about coronavirus stop you from seeking medical care or attention when you need it – whether your symptoms are linked to coronavirus or not. NHS services are open to support you, so please do contact them.
- If you are worried about coronavirus, use the support lines that are available.
- Use the accessible information available on trusted goverment sites including;
- In these difficult times, be aware that services may be affected and may need to work in different ways. They should explain if any changes are made to your care and support. Face-to-face appointments may not be possible, but services should talk to you about this and offer an alternative.
- If you are in hospital you should be supported to maintain contact with your family using the telephone or the internet. Staff should support you to do this.
- Make sure people understand the impact on you (or if it is appropriate, your family) if your care and support package has changed.
- You can challenge any rules or decisions made for whole groups of people, rather than on an individual basis, because they affect your care and support package (this is sometimes called a blanket restriction or decision). Changes should only be made on an individual basis after your needs, and the risk of changing your care and support, has been considered.
Some things you can do to help
- Don’t be afraid to ask for advice or support – talk to friends, family, advocates and others who support you; stay connected with people. You can do this using the telephone, Skype, Facetime, Microsoft Teams, WhatsApp, and there are lots of other apps that will support you with this.
- If you don’t have access to, or find it difficult to use these things, talk to someone you trust about what might be the best way for you to stay in touch, and let them know you need help if you do.
- Let people know if you don’t have the right equipment to communicate with them via the internet or social media; you might be able to get some help with this. Talk to your social worker, keyworker, care co-ordinator or other professional involved with your care and treatment.
- Be prepared – try to make sure your health passport, health action plan and any other health documents you have are up to date. You can ask your supporter, friends, community nurse, social worker or carer to help you do this.
Advice for family and carers about engaging with services
As well as looking after your own wellbeing and planning ahead, it is important that family and carers:
- Are not afraid to ask for help if (you) or your family member is at risk of crisis (e.g. through your social worker, health commissioner or local authority helpline).
- Know the current status of important appointments, what is happening about them and how or when they will happen (e.g. if they are being reorganised or moved online).
- Ensure fear of COVID-19 doesn’t prevent them from seeking urgent medical attention for other non COVID-19 illnesses during this period (e.g. toothache) or from keeping up to date with existing health needs (e.g. putting in prescriptions for medications). Health services are putting in place lots of precautions to prevent the spread of COVID-19, with many reconfigured to separate patients with symptoms of COVID-19 from those without.
- Are not afraid to raise concerns and challenge:
– any discrimination in care and treatment that does not respect your family member’s rights and their need for reasonable adjustments
– Be confident about challenging diagnostic overshadowing by clearly sharing what is normal for the individual, what has changed and why you are concerned
– decisions made about care and treatment without appropriate risk assessments
– where you see the do not attempt cardiopulmonary resuscitation (DNACPR) recommendation being made because of a disability diagnosis, age or other protected characteristics, rather than on an individual, person-centred approach.
- Keep in touch when unable to physically visit your family member. If you have difficulty accessing or knowing how to use technology, then let professionals know if you either don’t have the equipment or knowledge and ask them how they can help with this.
- Recognise the challenging conditions many clinicians and professionals are now working in – and understand if things are not always done as quickly as you might like, but don’t leave things unaddressed if they are important for you or your family member.
- Seek information and advice from trusted sources, both locally and nationally.