Healthcare Funding Via NHS Continuing Care Provisions

Social care via Local Authorities in UK is subject to a financial means test which for most people, with nominal savings, involves a personal financial cost. Care workers, in my opinion, have far too many people to see each day, so visits are made when they can, and not when they are actually required. The times may differ each day so washing, dressing, meals, and bed time, can vary to suite the Worker’s timetable. I am sure there are many devoted care Workers but the numbers of patients and time constraints is a daily issue.

NHS Continuing Health Care is however assessed on a “NEEDS” basis so if the person’s needs are high enough they can qualify for a “Personal Health Budget” paid by NHS 4 weekly to a designated Bank Account. There is no means testing whatsoever. The difficulty however is how to qualify via a system of stonewalling, distortion of facts, and an attitude of putting obstacles in the public’s way, in the hope that they will give up on their Application and go away, in my opinion. You need therefore to be determined to obtain your rights on behalf of your Dependant Relative, and be prepared to fight all the way up to the NHS Ombudsman, if necessary. The whole process took me approaching 12 months to achieve, but this was because I was unprepared and did not know how the system worked. We had to go to an Appeal Panel eventually, but when our case was won the benefits were backdated to the day the original Decision made refusing care for Pauline at home. The Appeal had to be made within 6 months of the date of the Refusal Letter on 7.1.2015.

When completing an Assessment, Social Workers and NHS use what they call a “Decision Support Tool” (DST) designed to accurately note under each category of “Need” the correct level of intensity that is applicable. These range from “Priority” to “No Need”. A “Priority” “Need” in any one of the four Domains that can carry this level of need, or “Severe” in two or more Domains, should lead to a clear recommendation of eligibility for NHS Funding.

A Domain describes each category of need on the DST Form. There is flexibility however so one score of “Severe” together with a number of “High” or “Moderate” levels of need can also qualify for NHS Funding. The separate Domains are further explained below, together with our personal experience of being assessed for eligibility. It may also be apparent to you that there is a lot of scope for personal opinion when using the DST. The aim of this method of Assessment is to obtain consistent results throughout UK, and there is Case Law noted below to enable you to read up on the cases concerned to prepare for your own Assessment Meeting.

The medical condition being assessed must qualify as a “Primary Health Need” and will therefore have to be serious and debilitating. With Pauline in mid or even Later Stage Dementia our DST at the Appeal Panel hearing scored only 4 “High” needs and 5 “Moderate” needs, whereas I was sure Pauline had at least 3 “Severe” and 4 “High” needs. However we scored high enough to win the Appeal after 9 months of self-funding Pauline’s care needs at home.

At the initial Assessment Meetings I had no idea what a DST was and how Pauline’s needs had to be described. A professional health Worker can go through these questions rapidly, and however well-intentioned they cannot know exactly how complex life is each day for you coping with the health situation in your home. One slip or downgrade can make the difference between eligibility for care funding or a refusal! It is essential to understand the DST and research case history on a computer before the Assessment Meeting in my opinion. Actual case history where NHS have granted Funding to people with Alzheimer’s I found on the internet, and is further explained in the section dealing with “Implications for other people with Alzheimer’s.


Care Domains in the Decision Support Tool (DST)

Great care is necessary at the Assessment Meeting to accurately describe and score the “Level of Need” under each of the 12 separate categories of “Need” in the DST Document. This will take some time to complete so your concentration will have to be at its highest level possible in my opinion. You will be dealing with someone with qualifications who has experience in these matters which you will not have personally. You need to prepare as thoroughly as possible, and to help I will include details of Pauline’s personal health facts of daily living for your assistance.

Bear in mind the categories of “Need” range from the highest level called “Priority”, to the lowest level of “No Needs”

1.    Behaviour

This by definition is difficult to describe and a complex area to adequately cover as a Domain. It ranges from Challenging Behaviour such as Aggression, Severe Disinhibition, Noisiness, Restlessness, Resistance to Care and Treatment, Concordance, Severe Fluctuations in Mental State, Extreme Frustration with Communication Difficulty, Interference with Others, and high Risk of Suicide. The risk to themselves, others and property, Self-Harm and Self Neglect irrespective of living environment, are all Behaviour issues. There may be more, and they need to be discussed and assessed accordingly as per Risk and “Need” for care in an accurate way.

Pauline’s care required all moves to be assisted because of her Disability and need of a Wheelchair at all times. Because of Alzheimer’s disease her reactions and responses could be extreme and unpredictable. She could be short tempered and prone to verbal outbursts. If left alone Pauline would call out and get very distressed if there was no immediate response. Her short Term memory defect meant Pauline had no comprehension how long she had been left alone, and whether I was in the house, or had gone out somewhere.

Having familiar and secure continuity of carers greatly assisted our situation at home, and no doubt because we were coping with these Behaviour issues and they were predictable the Appeal Panel decided our “Needs” were only “Moderate”. I had ranked the “Needs” as “High” or even “Severe”, certainly closer to the highest category of “Need“ in the DST Form. This downgrading could have caused us to lose the Appeal, but fortunately the other categories scored enough for the overall total to be enough to get NHS Funding.

I would urge anyone approaching an Assessment, especially an Appeal, to be careful under this category of “Need” to state their case assertively to reflect their current situation and all of its details, especially if you have found a way of managing every day by the time of the Assessment. The objective is to reveal the true situation and the correct level of “Need”.

2.    Cognition

This Domain applies to individuals with learning disabilities, and degenerative disorders. Professional judgements are required to determine the level of “Need” and Risk to the person being assessed. There is a National Framework Guidance in force which needs to be applied under the Mental Capacity Act, including the individual’s ability to make decisions and choices.

As Pauline had been diagnosed with Alzheimer’s disease in 2012 she was clearly unable to make decisions about her own care, and required close supervision with all activities of daily living. Pauline was unaware of risks to her personal safety which was made worse by her short term memory loss. Her attention span had steadily worsened, and could no longer watch television programs to the end.

The Regular carers who called at our home, and were recognised and familiar to Pauline were a great help, although she could not always recall their names. We managed this situation by requesting photographs of the carers from Home Instead Senior Care, and I wrote their names on the photographs. By showing Pauline the photograph prior to the carer calling at our home we avoided stress as far as possible.

The Appeal Tribunal readily agreed with my Assessment that a “High” score was appropriate to Pauline’s health “Needs”, although there are higher levels of classification if more appropriate to your circumstances. If achieved then this will be helpful in obtaining the goal of a “Personal Care Budget” to manage your care needs at home long-term.


3.    Psychological & Emotional Needs

Irrespective of the underlying condition the impact of this category of needs to the Individuals health and wellbeing have to be assessed. This Domain is used to record how they contribute to the overall care needs required. Where the individual is unable to express their needs due to their overall health situation this is the place to record the details, and make a judgement on how important this category is for them personally.

As Pauline had already been Assessed as suffering from Alzheimer’s Disease by a health professional it was quickly agreed that a “High” level of “Need“ was appropriate to her situation. Daily close supervision together with assistance and prompting was required with all activities of daily living. Pauline also had a long history of Depression, Manic Disorder and Intentional Self-harm, dating back for most of her life. This involved Admission to psychiatric hospitals on several occasions before our marriage in 1984. Although well managed for the previous 30 years by our GP with effective medication, Pauline relied on me absolutely to dispense the tablets daily due to her poor memory. With manic Depression there can be chronic anxiety together with extreme reactions which required constant and careful management daily. Provided Pauline did not get upset her mood was fairly stable, but this meant that she could not be left alone at home just in case something went wrong. Regular visits from Family and Friends, together with Daily visits from Home Instead Senior Care managed these issues very well. People who did not know Pauline well may not have realised these serious health issues existed but the full extent of them had to be noted under this Domain.

Again I would urge anyone facing issues of this type at home to be completely open and truthful, and make your case strenuously to obtain the highest category of “Need” appropriate to your circumstances. There are higher categories than the one we achieved although Pauline’s mental health was a huge issue thought out her life. There are categories of “Severe” and “Priority” but neither of these appeared on the Results page leading me to guess that we in fact got the highest level of “Need” possible at the Appeal Tribunal. The “Decision Meeting” held on 12.12.2014 recorded Pauline’s “Needs” as only “Moderate” so I was very relieved that the Appeal Panel, after hearing my evidence, and looking at the facts more closely came to an appropriate decision of a “High Need” in this Domain.

4.    Communication

This Domain deals with the ability to communicate clearly verbally or non-verbally, and having a good understanding of the primary language used at home. Any difficulties with expression and understanding need to be noted, including the use of pictures, sign language, Braille, hearing aids etc.

Pauline had clear speech, but with Alzheimer’s disease, and poor memory, the content tended to be repetitive. Her answers had therefore to be pre-empted and anticipated.

Pauline also suffered from the Eye condition Glaucoma and lacked peripheral vision in Both Eyes. This was caused by too much internal eye pressure which was undiagnosed over several years. Once detected it was treated with Eye Drops 3 times daily, and regular 6 monthly check-ups, with laser treatment as required to prevent further deterioration. This Glaucoma condition had to be advised to all visitors to our home to ensure they approached Pauline from her Front as she could not see things from her side.

Even though Pauline had very obvious communication problems the NHS Assessment concluded that only “Moderate” needs existed. The Assessment on 12.12.2014 unbelievably ranked this Domain as “Low “so the Appeal Panel at least understood that both Alzheimer’s Disease and Glaucoma greatly affected Pauline’s ability to communicate. However I would have rated Pauline’s needs as “High”, and so would urge vigilance again when facing an Assessment in order to get a correct and fair score in this Domain. NHS appear to take the attitude that the person being Assessed has to be unable to communicate their needs before they award a “High” score in this section, so be warned and prepared to argue your case if necessary.

5. Mobility

This section considers individuals with impaired mobility, and includes issues like wandering into account. If you have had an up to date “Moving and Handling & Falls Risk Assessment” this will be helpful evidence to put forward in your Assessment for NHS health care.

Pauline had required the use of a Wheelchair, due to a long standing Back injury, for the previous 12 years when Outside our home, and latterly within the house, when a Walker was deemed too dangerous for her to use due to the risk of falls. Pauline had become less safe around the house and I kept a record of her falls so that the details were available on request at our GP Practice. These were mostly at night when I was asleep and Pauline got out of bed for a Toilet visit. I installed pressure pads beside the Bed which are available from NHS on request. Also one was installed under the carpet by the Bedroom Door to wake me should Pauline try to go Downstairs unsupervised on her stair lift.

Pauline also had the condition Bilateral Lymph oedema in both of her Legs. The excessive fluid problem was controlled by special hosiery used daily. Pauline could not turn herself in bed at night and required re-positioning once or twice a night.

The Appeal Panel agreed Pauline’s needs were “High” as physical harm and pain on movement was a constant issue, and she was unable to co-operate effectively. There was a high risk of falls occurring just getting into or out of a chair or wheelchair. Also the toilet and car were risk areas daily.

If you are in a situation where your loved one cannot bear their own weight, or re-position themselves without assistance then you should qualify at the same level as Pauline or possibly at a higher score of “Severe” as that is also available in the DST Questionnaire, I presume for people completely immobile.

6.    Nutrition – Food & Drink.

If an individual is at risk of malnutrition, dehydration, aspiration issues, or weight loss is significant in recent years, then this category of Domain is important. However to get into the “High” category they will need to be already receiving skilled treatment to ensure adequate nutrition / hydration, and are likely to be on a feeding device. If they need feeding and take a long time to consume a meal, or even liquidised food, then only a “Moderate” score is likely to be achieved. Constant supervision to prevent choking, and prompting to eat, appears to rate a “Low” needs score. If choking is a regular occurrence I advise stressing this assertively to get a “High” score.

Pauline scored “Moderate” needs in this category in spite of being prescribed a saliva spray by our GP for a constantly dry mouth as a side effect of her daily medication. The dry mouth meant each mouthful of food, even liquidised, required a prompt to take a drink, or choking would be a high risk. I would have pushed this Assessment had we been required to Appeal to a higher Authority to secure NHS Continuing Healthcare. I believe Pauline should have scored “High” or even “Severe” needs in this category.

Daily drinks for Pauline required close supervision due to the constant risk of spillage, and consequent need for change of clothing. Straws and beakers were tried but as these required suction Pauline often found them difficult to use without encouragement. If I was not so attentive to her needs when Pauline was assessed we would have achieved a higher score in my opinion.

7.    Continence

As with nutrition I found the Assessment for Continence to be unsympathetic and frankly unrealistic in terms of a home Environment. Unless continence care is problematic and requires timely intervention beyond routine care like a Bladder wash out and manual evacuations then a “High” need Assessment is unlikely to be achieved in my opinion. Even the use of a catheter can be supervised by a District Nurse, so this does not appear to be ranked as a “High” need.

Pauline was incontinent of both urine and occasionally faeces. She had recurrent urinary infections and treatment from antibiotics. Due to the Alzheimer’s disease our daily carer was urged to be observant and if necessary enquire if passing urine was painful or not, if they were quick enough to get to the toilet or commode before an accident occurred. In spite of me suggesting our needs were “High” the level recorded by the Appeal Panel was only “Moderate”.

I would urge the public to be assertive under this Domain to get a fair score appropriate to their “Needs” and realistic for their home environment. Again I would have appealed if necessary under this category as I felt our needs were not accurately assessed at the Appeal.

8.    Skin Including Tissue Viability

Evidence of wounds and skin condition should be very carefully monitored daily. This is especially relevant where it is known skin rubs on skin daily at say the lower stomach area. Pressure damage can lead to wounds and ulcers which should receive specialist dressing and treatment via say a District Nurse. If this is a long-term issue then a “High” level of need may be achieved, or even a “Severe” score if necessary.

With Pauline’s care it was part of my routine, and later the personal carers, to ensure her skin was not allowed to break down by applying cream twice daily. I helped her re-position in Bed as required at night, and we attended the Lymph oedema and Diabetic clinics regularly. Pauline’s Diabetes caused partial loss of feeling in both of her feet, so we also attended a podiatrist as required to deal with any injury, and a chiropodist every 2 months. Due to the great care we took over Pauline’s skin we only scored a “Moderate” level of need on the DST. It appeared to me that the more you did for yourself the lower the score applied by NHS. This did not seem to be fair or realistic to me when the overall situation should have been relevant. Pauline was a “High” Risk person given her medical history in my opinion.

As before I would urge people to be vigilant and assertive when being assessed to ensure the NHS Continuing Healthcare DST is completed accurately and fairly. All wounds suffered should be carefully recorded over the years so nothing is left to chance in this Domain.

9.    Breathing

For individuals suffering from Emphysema or recurrent chest infections it is clear what difficulties they are managing under this category of need. If able to breathe through a tracheotomy, or suffering a condition not responding to treatment then perhaps it may be possible to get a “High” score.

Pauline was able to breath for herself and was recorded in the lowest category of “No needs “on the DST.

Although treated for repeated Bronchitis in 2014, 2 years before she died, Pauline was never given a C/T Scan of her Lungs by the hospital until Admitted a few weeks before her Death as described in greater detail below. I do not blame the NHS Appeal Panel on 12.8.2015 for their score as no one had any idea then that Pauline had a Terminal Illness affecting both of her Lungs which would make her breathing extremely difficult in the last weeks of her life. With the benefit of hind sight we left hospital on 24. 6. 2014 with both zero preparation and zero investigation as to her chest problems which had caused the Admission to hospital in the first place! Had this level of incompetence occurred in the private sector of Business or professions then I would expect their Indemnity Insurers would be preparing for a claim in my opinion!

As you can see from the above I am still suffering from the shock of losing Pauline on 9.2.2016. If someone has been suffering from a Chest Infection or Pain and Blurred Vision as Pauline presented on 19.6.2014 and Antibiotics had not been effective then something more should have been done before her Discharge on 24.6.2014. They may just have found what led to her death 18 months later.

Pauline had a mole removed from the back of her neck in December 2014 by our GP as a precaution. We were advised later that a myeloma was detected but of the lowest risk in terms of depth and so not to be concerned. Pauline attended 3 monthly skin check-ups which all proved to be satisfactory. No C/T Scan of her Lungs was advised or even discussed, so we were horrified to be told in January 2016 that Pauline had myeloma cancer in both of her Lungs and there was nothing the hospital could do to save her life! The NHS were however very sympathetic and gave us as much medication as required to relieve all of Pauline’s pain and suffering.

The lesson I would urge from my experience is not to dismiss a Domain like Breathing so quickly. If there is a chest Infection get it investigated and treated thoroughly by NHS or privately if NHS does do not have time due to Bed pressures to do the job properly. In Canada I have discovered routine C/T Scans are done in every case of myeloma! We have a long was to go for our NHS to be as good as health care elsewhere in the World in my opinion.

10.         Drug Therapies & Medication: Symptom Control

As previously mentioned it is important to come to any Assessment Meeting fully prepared.

Details of prescribed medication can be found on the Repeat Forms to the GP, and you should know what each one is prescribed for, and what symptoms are being managed. The intensity if each condition is important to determine the level of “Need”.

In Pauline’s case, as previously mentioned, she had a long history of Depression since childhood and due to the complexity of her medication on top of Alzheimer’s it meant that all tablets had to be administered under supervision. She was not capable of doing this independently, so NHS immediately gave a “High” level of “Need” at the Appeal Tribunal. Had Pauline been able to medicate herself then there would have been a lower level agreed. At the meeting on 12.12.2014 unbelievably the Assessment was given as a “Moderate” need! Had I realised there were different levels, by preparing more thoroughly for the meeting, I would have challenged this very obvious understatement! If I had not been at home caring 24/7 for Pauline then a Registered Nurse would have had to call in at least 4 times each day, and monitor her health constantly.

Home Instead Senior Care has a system for their staff to dispense medication and record details on a chart daily. There is also a helpful system via local pharmacies to dispense medication into “Blister Packs” daily. I managed to get signed up for this service in Histon, but had to wait on a list for 6 months until we were included. There are clearly only a limited number of patients per Branch with this service due to the time taken to liaise with GP surgeries and dispense medication accurately for up to 7 days at a time. These “Blister Packs” are necessary if professional carers are calling daily and are required to take responsibility for medication.

If in the Assessment the person is suffering moderate pain on other symptoms having a significant effect on other Domains then a “High” level of “Need” should be awarded. If the medical condition has the potential to fluctuate, or side- effects are an issue, then I would advise pushing for a “Severe” or even a “Priority” Level of “Need” in the case of unremitting pain. A score of this level would I believe immediately qualify you for an NHS Continuing Healthcare Personal Budget to finance adequately the care needs at home, as well as providing for the necessary Respite care of the person providing daily care 24/7, in order to maintain their personal sanity long-term.

11.         Altered States of Consciousness (ASC)

Anyone suffering from ASC on a frequent basis requiring the supervision of a carer or care Worker, to minimise the risk of harm should qualify for a “High” level of Assessment of “Need”. If ASC occurs on a daily basis with severe risk of harm then a “Priority” need is clear and NHS Continuing Healthcare should be available.

For Pauline she had “No Needs” in this category, which I was pleased to confirm at the Appeal Tribunal.

12.         Other Care Needs

If there are any circumstances not covered in the other Domains which are relevant to your situation they should be noted under this category on a case by case basis.

Pauline had no other needs under this heading.

Decision Support Tool (DST) At Our Appeal

The questionnaire used to note all the above categories of Domain is called the DST by Social Workers and NHS Assessment Staff. The initial Assessment Meetings were not as detailed as far as I was aware. Pauline was not given any “Priority “or “Severe” scores at the Appeal Tribunal, but was graded with 4 “High” needs and 5 “Moderate” needs. The other 3 categories were either “Low “or “No Needs”. The overall Result was well above the required score to achieve NHS Continuing Healthcare. Indeed 2 “High” and 3 or more “Moderate” levels of need would have been sufficient to qualify as far as I know.

The Appeal Panel sat on 12.8.2015 and agreed that Pauline’s health needs were such that without my care at home she would have to enter a nursing home immediately. Pauline was therefore properly assessed as being eligible for NHS Continuing Healthcare, and it was confirmed that her Alzheimer’s disease was identified as a “Primary Health Need”.

The panel also warned me that her health would continue to decline, and so the funding would require monitoring so that the actual costs of the provision of care at home in the future would be fully covered by NHS long- term. A Specialist Continuing Healthcare Nurse (CHC Nurse) was present at the Appeal Tribunal and she took personal charge of our case thereafter. The CHC Nurse dealt with the financial requirements in an exemplary manner via the Clinical Commissioning Group (CCG) local office for Cambridgeshire & Peterborough. The cost of care at home was financed via a Personal Health Budget (PHB).

Although the Appeal Panel warned me that Pauline would not live long, I expected at the time her Alzheimer’s disease would require nursing at home for at least 5 – 10 years, and possibly more. Our victory was hugely important as healthcare would be intensive and expensive, and it was easy to estimate a figure in excess of £ ¼ million. Pauline died on 9.2.2016, only some 18 months later from an unrelated, and totally unexpected, medical condition! Perhaps the panel wanted me to be aware and prepared to deal with her Death, which would not be pleasant, whenever it occurred. However I was prepared, at least financially, as soon as the PHB was in force, as it was very easy to get the required healthcare at home increased via Home Instead Senior Care, and NHS adjusted the cash transferred to the PHB 4 weekly on request via the CCG Local Office.