Implications for Other People with Alzheimer’s

To lodge an Appeal if necessary against a NHS Decision to Refuse Continuing Healthcare you need to quote case history and case Law where successful Appeals have been made in the past. These cases created Legal Precedent and a guide for the conduct of Assessments in the future.

The hard work had been done by those involved in these cases. I know this to be factual as I have seen Guidance notes prepared for NHS staff dealing with such Applications noting Legal Precedents of significance affecting Continuing Healthcare claims. However I was totally unprepared in December 2014 when Pauline was Refused NHS care 3 months after lodging our claim for this Benefit.

As previously mentioned an Appeal has to be made within 6 months of the Decision Letter. I had therefore to do Research and find People to help us, plus look after Pauline’s needs at home, all before July 2015. I studied cases published online, and obtained guidance from a lady trained as a Legal Executive, but employed by the Carers Support Team appointed to look after my needs as a Full time carer. I discovered several very helpful cases and the best one for people suffering from Alzheimer’s disease was coincidently relevant to a couple living in the same Health District as our own, and therefore presumably well known to the person who refused us any help!

Malcolm Pointon lived just South of Cambridge and was nursed by his Wife Barbara at their home. Barbara fought NHS right through to the NHS Ombudsman in 2003 to achieve her victory and get Alzheimer’s recognised as a “Primary Health Need”. She achieved funding for a Live in carer having been forced to give up work to care for her husband full time at the age of 51, after a huge battle lasting several years. In the NHS Notes this had the Reference Nmber PCT.E. 22/02-03.

In addition I discovered there was the Pamela Couglan case which clarified NHS Continuing Healthcare law in 2007, when a “Primary Health Needs Approach “was adopted and had to apply in all Assessments thereafter. This I expect led to the DST approach to try and get consistency of results throughout out the country. As previously advised you need to understand the Domains covered by the person making the Assessment to hopefully get a fair Result.

In 2005 in another case, Maureen Grogan challenged the NHS in the High Court for Care Funding, and won her case in 2006. She was chronically ill with multiple Sclerosis and Additional Needs with nil mobility and was already in a nursing home paying for her own care. Her home had to be sold to pay the care costs. The Judge ruled that NHS should pay for her care!

Now you have the Pauline Garside case as described in these notes. I managed to obtain the Appeal Tribunal hearing by quoting the above cases, and proving that Alzheimer’s Disease had been accepted as a “Primary Health Need “in the past, and Pauline should be reviewed again as a dreadful mistake had been made at the Assessment Meeting held at our home on 12.12.2014. This argument was accepted, and the Appeal Date arranged 3 weeks after my letter was received. If you are Applying for NHS Continuing Healthcare I would advise you to quote Pauline Garside, who got a PHB to be nursed at home in 2014 suffering from Alzheimer’s.


The Appeal Procedure and Appeal Submission

To put forward an Appeal to NHS I advise you to obtain professional Assistance. I discovered in an online search Kate Hurley who lives in the North of England. She was trained by NHS, but made redundant in 2011, and is now working to assist clients prepare in a professional format for NHS Healthcare Assessments. Had I looked and found her earlier then perhaps Pauline & I would not have needed to make an Appeal.

Kate provides an initial ½ hour advice free, but thereafter obviously has to charge on a time cost Basis. She was enormously important to me to ensure the Appeal Submission was professionally worded for the Appeal Panel who required a copy of my submission 2 weeks before the Tribunal Meeting sat to hear our case. Kate supplied the necessary paperwork by email in time for me to post off to the local CCG Office who dealt with the Appeal arrangements.

Kate Hurley can be contacted on, or telephone 01207 583788

The original Refusal Decision Letter was dated 7.1.2015 after the meeting on 12.12.2014 and gave us the Right to Appeal within 6 months. After conducting the Research and making contact with Kate Hurley my Reply Letter was dated 27.5.2015. The 6 months was nearly over and out of time! The Appeal Tribunal I was informed was not a Legal court so I was not permitted to have a Legal Representative speaking on my behalf. They could be present as moral support but not allowed to speak in the Room. It is my opinion that had I not done the Research, and been prepared by Kate, The Appeal would have been unsuccessful, in spite of our strong case for NHS support.

The Appeal Tribunal hearing met on 12.8.2015, and I recall there were 10 people in the Room facing me and my Legal Executive, who was not permitted to speak. It was therefore me representing my Wife Pauline against 10 people sitting in Judgement of our Appeal. The meeting lasted around 2 hours, and I was completely exhausted afterwards! I had been questioned in great detail under each of the 12 Domains by professionals trained and experienced in their field of expertise. There were Doctors, Mental Health Experts, Nurses, Social Workers, and an Independent Chair Person who I believe was a Retired Health Official, but no doubt had many years’ experience in health issues. I felt like it was me against the whole medical Establishment, but the Chair Person did try to keep the procedures friendly and atmosphere comfortable. As promised the Chair Person telephoned me later that Evening to advise that we had won our case and the Formal Letter would be forthcoming in the next 10 Days. It was stressed in the telephone call that Pauline was Eligible because of the Level of care she was receiving, and that her health was deteriorating.

The Formal Appeal Result Letter dated 25.8.2015 backdated NHS Continuing Healthcare to the Date of the initial Decision Meeting on 12.12.2014 which confirmed to me that at last we had got a fair Result. The support from CCG sprang into action and NHS provided Benefits as requested on a “Needs” Basis and not “Means Tested”, as would have been the case via the Local Authority. Everyone has a Right to be nursed at home, but to achieve your Rights with NHS you must be prepared to Fight, and keep fighting until this is obtained, as illustrated by our experience.