Having a child with additional needs can often mean that there are a number of different healthcare providers supporting their needs at any one time. Healthcare covers such a wide array of support such as GP’s, Dentists and Opticians to the more specialist hospital Consultant, Speech and Language Therapists and Wheelchair Services.
Different Types of Care
Most Healthcare services fall under Primary, Secondary or Tertiary care.
Primary care is anything you access directly and is generally the local care you receive from GP’s, Health Visitors, Dentists and Opticians. Referrals made by Primary Care Teams can often be the route by which other forms of care are accessed.
Secondary Care includes services which you may be referred to if your child needs to be seen by someone with more specialist knowledge. Examples of secondary care include services accessed at the Hospital, Child Development Services, Speech and Language Services and Child and Adolescent Mental Health services (CAMHS).
Tertiary Care is highly specialist support which may be needed if your child has a very complex or rare condition. A referral from a Secondary Practitioner is generally required to access Tertiary Care. Tertiary Care includes Specialist Hospitals, such as Great Ormond Street.
Advice and Tips for Attending Healthcare Appointments/ Planned Admissions
Attending healthcare appointments can be challenging at the best of times, particularly when you have to consider the additional needs of a child with a disability. Here are some practical tips from parents and carers to help prepare you for these situations.
- Write down your main points of discussion and any questions you may have- it’s easy to be distracted and lose your chain of thought during an appointment particularly if you are trying to deal with your child’s needs as well.
- Where possible take someone with you to appointments to help support your child and to be an extra pair of ears. If your child becomes anxious they can take them from the room whilst you can continue to speak to the Clinician.
- Try to book appointments at times that would suit you and your child this may be at the start of Clinic when the wait time will be less.
- Phone ahead- Sometimes the service may be able to help you with some of the issues you may encounter or situations your child may find difficult i.e. if your child finds it difficult to be in loud or crowded environments they may be able to provide a quiet room where you can wait.
- If you have a Communication Passport take this with you and hand it to the Doctor before the appointment. This allows them to get a sense of your child and their needs and can include information on how they communicate, what might upset them. We also advise taking a photo copy of the passport to leave with the Doctor so that it is on file for the next visit.
- Chelsea Westminster Hospital has a Learning Disability Flagging System. This system allows you to give information such as, early morning appointments preferred, needs a quiet place to wait, whatever information that makes your child’s experience of hospitals easy, for Chelsea and Westminster Hospital information click here, or Contact Samantha Peters at Full of Life on 0208 960 9064 firstname.lastname@example.org
- Some hospitals such as Chelsea and Westminster Hospital, have their own Hospital ‘Passports’, which can be taken to Hospital and Doctor appointments. The information in these can be made a bit more specific to healthcare environments. It can include information about your child’s needs and what treatments they’re receiving from different professionals. The passport is also useful in explaining their communication needs, what might upset your child, and how to tell if they’re in pain. For Chelsea and Westminster Hospital’s passport click here.
- Ask the GP’s receptionist to put a note on your child’s file so that if possible you can see the same Doctor, this can not only be helpful for your child but also means you will not have to explain your child’s history over and over. (This may be more difficult for emergency appointments, but it may still be worth the try).
- If needed, do a preparation visit by taking your child to the healthcare facility before the appointment. This will allow you to familiarize them with the surroundings and prepare them for what will happen. If you phone ahead some doctors or providers may also be able to arrange for the receptionist to meet you or the Doctor to introduce themselves to your child.
Healthcare Commissioning and Review
There are several Groups and Boards that are responsible for the Commissioning and Review of Healthcare Services in the Local Area.
Clinical Commissioning Groups (CCGs)
Clinical Commissioning Groups (CCGs) were created following the Health and Social Care Act 2012. They are clinically-led statutory NHS bodies responsible for the planning and commissioning of Health Care Services for their local area. There are now 211 CCGs in England.
Health and Wellbeing Boards
The Health and Social Care Act 2012 establishes Health and Wellbeing Boards as a forum where key leaders from the Health and Care system work together to improve the Health and Wellbeing of their local population and reduce health inequalities. Health and Wellbeing Board members collaborate to understand their Local Community’s Needs, agree priorities and encourage commissioners to work in a more joined-up way. As a result, patients and the public should experience more joined-up services from the NHS and Local Authorities in the future.
Local Healthwatch is the Consumer Champion for users of Health and Social Care Services, created as part of the Health and Social Care Act 2012, and replacing the Local Involvement Networks (LINKS). Healthwatch Central West London will cover Hammersmith and Fulham, Kensington and Chelsea and Westminster. Each Borough will be supported by a Local Committee.
Healthwatch Kensington and Chelsea will ensure the views of people, patients and carers are represented and influence the way Health and Social Care Services are commissioned and delivered. They will also feedback information to Healthwatch England and report concerns about the quality of providers, independently of the council. For Healthwatch kensington and Chelsea click here.