Hints and Tips (based on my experience)
Updated: Mar 9
With Christmas just a few days away, rather than continue the story of my hell with West Hampshire CCG and NHS Continuing Healthcare, I thought I would share my hints and tips for getting through the process. These are borne out of my personal experience.
1. Record all meetings. This will provide evidence if there is a dispute. I have even made covert recordings. The WHCCG really did not like it and claimed I was not allowed to. Wrong. I am fully within my legal right to do so.
2. Know the National Framework and your local CCG’s policy inside and out. This enables you to challenge due process. Do not assume that they are right or that they are even telling the truth. Demand evidence of everything. If it is not in a policy, it is not due process and is therefore potential discrimination.
3. Challenge everything that is contrary to the National Framework and local policies.
4. Ask the medical experts that look after you/your loved one to assess you against the relevant Decision Support Tool domains so you can use it in an assessment.
5. Question the 'expertise' of the professional(s) conducting the meeting. If they are not experts in your medical condition, they need to accept the views of the experts (case law - R (Clarke) v Sutton LBC ).
6. Read between the lines. What are they not saying?
7. Be careful when they talk about 'care'. Stating that care is required does not differentiate between health care and social care without a primary health need. Ensure clarity because social care on its own or in a joint package of care is means tested.
8. 'Poor communication' by the CCG is not an acceptable excuse to carry on despite ignoring due process. Challenge this.
9. If possible, have someone with you at all meetings. They provide reinforcement and are a witness to proceedings.
10. Prepare in advance. Have everything ready, including your judgement of Decision Support Tool domains.
11. Use email and letters for everything so that you have it in writing. The evidence could be crucial for complaints.
12. Domains should be assessed as if care is not in place. If someone (including a loved one) provides voluntary care, how would things be if it were not there. A primary health need either exists or it doesn't, it is irrelevant who is currently providing the care as the CCG are not allowed to assume that a voluntary carer is willing and able to continue.
13. Understand the principle of 'well-managed needs'. They are still needs and should be assessed as such.
14. If there is a care agency/home already involved, check the care plan/notes. Are they reflective of the needs? If not, be prepared to explain why not. Remember, in accordance with the National Framework, well-managed needs may not be recorded in care notes as effectively.
15. Social care is permitted under Continuing Healthcare but CCGs often try to share the cost of the package with the Local Authority, especially through Funded Nursing Care. The Local Authority should only be involved when the care provided is not beyond their legal limit, in accordance with case law and the Care Act 2014. For the sake of simplicity, if the social care elements are removed, what level of healthcare is required?
16. Make sure you can back up everything that you say.
To help maintain a sense of sanity and humour, there is a little game I sometimes play. Name some songs that get you through the hell of the NHS Continuing Healthcare ‘process’. Some of my favourite songs are:
· Speechless – Naomi Scott (from Aladdin)
· I Won’t Back Down – Tom Petty
· Tub Thumping – Chumbawamba
· Titanium – David Guetta
· I Hate You So Much Right Now – Kelis
(UPDATE - @Thepenof recommended another one - Fight Song by Rachel Platten. Good choice!)
For those interested in wider reading, I loved a book by Chris Vos, a former FBI negotiator – Never Split the Difference. I have listened to it multiple times on Audible and only wish I had listened to it prior to all this nonsense with WHCCG as I would have been better prepared to challenge their actions.
I write this as the new Covid rules for Christmas come into force. I live just a couple of miles from the new Tier 4 so have friends directly impacted by the new rules, never mind the whole country having the Christmas ‘bubble’ period shortened. Whatever your circumstances, I hope that you can get some time to relax and enjoy yourself of the Christmas period.
I will recommence my blog in the new year when I will release revelations that are even more serious against WHCCG, along with the Hampshire County Council, the Parliamentary and Health Service Ombudsman, the Information Commissioners Office, and the Nursing and Midwifery Council.